Karma

Thyroid symptoms -- hypothyroid, Hashimoto's

174 posts in this topic

I posted on Soul's thread and Alto suggested that I start a topic in symptoms for thyroid (which was a brilliant idea). I have Celiac Disease and Hashitmoto's thyroiditis and I can tell you that I had awful pains and symptoms (fatigue, irritability, brain fog, joint pain, inability to interact with others) until I got proper treatment. I was relieved to learn that there was something treatable that was responsible for the symptoms I was having.

 

I read through Soul's thread and saw that she has pain as symptoms - she even mentions one day when her feet hurt, which is actually a classic hypothyroid symptom. (I had awful pain in my feet - they would go numb - after treating my hypothyroidism I have no problems at all). I saw where Soul was diagnosed with gluten intolerance ... research has proven that Hashimoto's thyroiditis is present over 50% of the time when gluten intolerance (or Celiac Disease) are present.

 

Doctors ... endocrinologists ... are notorious for missing this diagnosis until the TSH lab value gets high enough that it exceeds the normal range. Until that happens the doctor will tell you, "all tests are normal."  Where I live the TSH is 0.45-4.5 or even 0.35-3.5, but I've seen people exhibiting severe hypothyroid symptoms with TSH values at 2.

 

Some of the symptoms we experience may be due to a thyroid condition. I recommend getting a copy of the labs that your doctor ran - or request that your doctor run these labs: Free T3, Free T4, Reverse T3, Thyroid peroxidase antibody (TPOAb); Thyroglobulin antibody (TgAb). Get a Reverse T3 at the same time you get the Free T3. To feel your best you want the Free T3 in the upper part of the range; the ideal Free T4 is mid-range - the doctor may tell you that your tests are normal because they fall within the range, but the reality is that your doctor needs to take into consideration your symptoms.

 

For Reverse T3 we will do a calculation to determine the ratio of Free T3 to reverse T3 - this web site can help you calculate and interpret your RT3 ratio: http://health.groups.yahoo.com/group/RT3_T3/messages

 

The results for Thyroid peroxidase antibody (TPOAb); Thyroglobulin antibody (TgAb) - If you have any antibodies at all you have Hashimoto's thyroiditis (the lab may say that < (less than) some number is normal, but what it really means is that you are not currently having an attack, but you have had an attack).

 

Hashimoto's thyroiditis is an autoimmune disease - the body is attacking they thyroid. Doctors will test the TSH (thyroid stimulating hormone) which is not a thyroid hormone at all - it is a pituitary hormone. It is considered the gold standard for thyroid, but the values for normal are skewed and labs have reported that they cannot change them because it would cause more people to be diagnosed hypothyroid (translation "it would make us look bad").

 

Note that Total T4 or Total T3 are not really helpful labs - we want to know what is available for the cell receptors and that is what the Frees represent. This patient advocate site can help you interpret your thyroid labs:

 

http://health.groups.yahoo.com/group/NaturalThyroidHormones/

 

Karma

Edited by Altostrata
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PLEASE DO. :-)

 

I was not aware that TSH is a pituitary hormone

My endocrinologist told me recently that TSH is a 'moving target' and therefore extremely unreliable in catching thyroid problems ~ my mother's TSH was 10 last year and her PCP thought it was a fluke and opted to not treat and retest in 6 weeks ~ when I found this out we had a 'chat' and he came around to my way of thinking ;)

 

Thank you for any guidance on endocrine issues and testing ~ I've known that PCPs don't know the proper tests and how to interpret but I'm also learning that there is great variability among endocrinologists • for example a Diabetes specialist may not be up to date on HPA testing •

 

Q: Is there a good resource to locate an appropriate subspecialist/thyroidologist/pituitary

 

Thanks Karma

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My thyroid peroxidase antibody (TPOAb) went way up when I was in acute withdrawal but have been going down since. Does anybody know what this means?

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Alto that would indicate that while you were in acute withdrawal you were suffering an autoimmune attack to your thyroid - your body was inappropriately attacking your thyroid gland.

 

The fact that the numbers are going down would mean that whatever caused the attack is subsiding. If the numbers are still above the normal range it means you are still having an autoimmune attack and might want to look into what could be causing the attack. If the numbers are within the normal range it would indicate that you are no longer under attack.

 

Autoimmune diseases tend to be seen in clusters. When one has Hashimoto's we look for other autoimmune conditions like Celiac disease, diabetes type I, Vitiligo, Sarcoidosis or Sjögren's syndrome. The medical community doesn't know what causes the autoimmune attacks, but we (the patient community) have seen relief in the number of antibodies when people investigate and resolve food allergies.

 

The eight major protein allergens are wheat/gluten, soy, eggs, fin fish, shell fish, peanuts, tree nuts, and casein found in dairy. However, I've also run into people with allergies to corn and even rice. A true allergy to gluten might also make you sensitive to say casein and soy. That was originally the case for me, but since I healed my gut I find that I can handle moderate amounts of dairy with no symptoms whatsoever. I still avoid soy, but similarly on the occasions when I've gotten a hold of it, I've had no symptoms at all.

 

Karma

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Interesting. I am, in fact, mildly allergic to eggs and peanuts and highly allergic to shellfish. Tests for celiac disease were negative.

 

Had something most of my life that might have been called IBS -- but those symptoms have gone away in the last year or so.

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Q: Is the presence of antibodies ever 'normal'

 

Thanks Karma ~ I could keep you busy for awhile ;)

Vitiligo for one …

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For a list of hypothyroid symptoms I recommend checking out the Stop The Thyroid Madness site: http://www.stopthethyroidmadness.com/long-and-pathetic/

 

The key symptoms for me included always being cold, cold hands and feet, painful feet, severely hard stools (I was lacking magnesium), dry cracking skin, carpal tunnel syndrome, foggy thinking, forgetfulness, joint pain, muscle/bone pain, exhaustion in every dimension–physical, mental, spiritual, emotional, low body temperatures, and inability to lose weight.

 

With proper treatment I have lost nearly 30 pounds and kept it off for several years. I am not cold all the time, my feet no longer hurt at all, I no longer have any carpal tunnel symptoms, I have no joint, bone or muscle pain, I have good energy and have normal sleep/wake patterns where I wake up refreshed. I still have a little forgetfulness, but that may be associated with low estrogen. Generally I no longer have foggy thinking or brain fog ... if I start to get brain fog I know I need to check my thyroid treatment as that is one of my early symptoms.  The other symptom that shows up quickly for me is dry, cracking skin ... however, I live in a very dry climate so some of that goes with the territory.

 

For a list of low cortisol symptoms I recommend checking out the NTH Adrenals Web http://adrenalsweb.org/ Look under Symptoms of Adrenal Fatigue - Low Cortisol. For me the key symptoms were fatigue, continuing hypothyroid symptoms with a high Free T3, inability to handle stress and feeling better after 6 PM - I also had difficulty falling asleep at night and difficulty waking refreshed. Treating my adrenals allowed me to completely banish fatigue and it also helped with the sleep/wake pattern.  I do, however, need to wean off of the treatment I am taking for adrenals which gets more dicey when combined with AD and Benzo withdrawal - so not necessarily recommending it - just sharing my experience.

 

Here is the trouble with traditional doctors: Ultimately, every time I would get my thyroid treatment high enough to resolve my hypothyroid symptoms the doctor would call and tell me that my TSH was too low (she would say my thyroid treatment was too high) and make me lower my dose. That almost always resulted in a constant low grade depression, fatigue, and a fair amount of paranoia.

 

My pdoc agreed with me that these low grade depression episodes were directly related to my thyroid treatment. I finally convinced that medical doctor that we needed to go by my symptoms and Free T3 and disregard the whole TSH - that made her uncomfortable. But no one could argue with how much healthier I was getting. When I insisted on treating my adrenals my medical doctor found me a wellness doctor in the area who specializes in alternative treatment and he agreed to take me on as a patient.

 

My medical doctor said that my research was far advanced of her knowledge and she didn't feel she could give me the guidance I needed - I think she wanted to avoid losing her medical license as our state medical board doesn't like alternative therapies - however, she has not dropped me as a patient, so I guess this is the best I could hope for.

 

In the files section of the the Natural Thyroid Hormones board there is Good Docs list for the US and outside of the US - http://health.groups.yahoo.com/group/NaturalThyroidHormones/ I hope this is helpful. I am not suggesting that everyone has thyroid problems, but I am suggesting that if you do have thyroid problems that getting sufficient treatment may well help you feel better and help you get through antidepressant withdrawals.

 

Love and light,

Karma

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Q: Is the presence of antibodies ever 'normal'

 

Thanks Karma ~ I could keep you busy for awhile ;)

Vitiligo for one …

 

 

Hi Barb,

 

To my knowledge, no, it is not normal to have [thyroid] antibodies.

 

I have a friend who has vitiligo - about three years after we found out I had Celiac Disease we found out she had Celiac Disease ... then she had a huge goiter on her thyroid and two different endocrinologists dismissed it and said that her numbers were normal :unsure: ... she also has interstitial cystitis which is suspected to be an autoimmune disease. We finally got her to an internist who had some experience in this area and now she is finally on thyroid treatment and doing better.

 

Just to be clear - I am not a medical professional - I am just a patient who is active in patient advocacy and have gleaned knowledge from my participation with a community of 5000+ patients. However, I don't think you can go to the doctor and just blindly follow their guidance - you have to do some research and educate yourself. I believe that the patient manages the patient's health and the doctor is the high-paid consultant who's opinion we can consider ;)

 

Karma

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Interesting. I am, in fact, mildly allergic to eggs and peanuts and highly allergic to shellfish. Tests for celiac disease were negative.

 

Had something most of my life that might have been called IBS -- but those symptoms have gone away in the last year or so.

 

Alto it could have been a reaction caused internally to one of these allergens - once the body dealt with it and you were no longer consuming the offending protein then your antibodies would minimize.

 

Karma

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Just FYI

 

~Labs my endocrinologist has ordered for general endocrine failure (suspected) Met panel w/eGFR CBC w/diff ACTH -plasma ARA IFA w/RFL IFA CORTISOL -total ESTRADIOL FSH HEMAGLOBIN A1C PROLACTIN TESTOSTERONE -free&total VAP TH CHOLESTEROL B12 IGF-1 PTH INTACT TSH w/reflex T-4 free URIC ACID VIT D-25HYDROXY -LC/MS/MS-S SERUM IMMUNE FIXATION * ICD 9 CODES: 253•2…627•2…190•22…350•9

 

One of those is PANHYPOPITUITARISM 49yo female ~no pregnancies My FSH level was above Post Menopausal a few yrs ago even though I never had clsssic symptoms of hot flashes and insomnia (may have been suppressed by SNRI) I made up for it in mood symptoms --PMS gets worse with age I learned I've been treated for Hashimotos since 1996 w/Synthroid -wasnt aware of Armour until my horse needed it but Synthroid worked MUCH better than levothroid

 

Tried Cytomel (T3) occasionally without noticeable improvement ~ TSH checked regularly by LomaLindaUniv Endocrinology (I insisted on fT3 and lab tech agreed-said docs are clueless) Doc ordering tests above dx me in '96 and hadn't seen me in 10 years since I moved out of his area ~ Weight dropped from 140 to 95ish in that time and all of the docs I saw said EAT MORE or questioned me about anorexia/bulimia/illegal drug use (in that accusatory way they have) but NEVER checked anything but thyroid (usually TSH)

 

I realize these test results may be skewed by meds but Ive been avoiding for months and feel like death~i won't jump into any treatment to replace hormones my system isn't producing (possibly all) and will find most benign possible ~ Doc is very aware of dangers of SS/NRIs and worsening depression ~ Karma ~feel free to share with any groups~im a willing case study *this is workup for FAR MORE than thyroid issues that have been previously diagnosed~didnt want to alarm anyone ii Although my understanding is that the clinical picture was likely exacerbated and hastened by psych drugs (originally prescribed for fatigue) and missed by at least a dozen psychiatrists and endocrinologist over the years as every symptom was attributed to depression •

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It will be interesting to see what your labs look like. I went into menopause early (most likely due to Celiac disease). My bones were at Osteopenia when I was 49 so I started supplementing with bio-identical hormones. They are compounded as I have strong opinions about the ones the pharmaceutical companies hawk. It has really helped me.

 

I like natural dessicated thyroid, but Armour changed its formula in 2009 and it jacked up a lot of people. We recommend NatureThroid or ERFA out of Canada (you can get it with a valid prescription from many reputable Canadian pharmacies). I had to switch to T3 only because my reverse T3 got so high that I was in a perpetual state of hypothyroidism.

 

My TSH is suppressed and I treat to cessation of symptoms and monitor average daily temperatures (Broda Barnes). Traditional doctors dismiss the whole temperature thing, but I can't tell you how many patients I've seen use this method and find a level of health that their doctors were unable to achieve with TSH. (I do feel like I am limited in optimizing my health using this technique due to still taking the AD and benzo, but I've achieved really good results, albeit I cannot optimized my average daily temperatures to around 98.6).

 

We've also had testimonials that natural dessicated thyroid actually improves bone density and that would be because it contains all of the thyroid components including calcitonin. I hope you find something that you can address to feel better.

 

Karma

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Thanks Karma

Yes --eeird to say but I certainly hope something shows although looking for the least harmful treatments will be another mountain

I've been sick since early 90s and I just dont have any fight in me anymore

Got in a minor car accident on way home from lab even though I waited an hour to drive ~ no injuries except to cars

I think I blacked or fuzzed out for a second and rearended a car

 

My husband wouldn't come help me 2 miles from home ~ im feeling so hopeless and alone

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I'm so sorry that your husband wouldn't help you. I know what you mean about hoping that something shows up in the labs ... I was so relieved when they said I had hypothyroidism - it meant there was something we could work on. I just didn't know that tradition medicine was so inept at treating it.

 

Don't feel hopeless and alone ... clearly you aren't getting support at home, but you have us.

 

Karma

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My doc is anticipating that all of my hormones will need to be replaced ~estrogen/testosterone /steroids --anything produced by pituitary thyroid adrenals --essentially replacing my endocrine system --i try not to think about it but it's overwhelming especially just as I got off of antidepressants

My endocrine doc is in tune w the dangers of SSRIs :osteopenia/porosis ~cardiometabolic/stroke ~psrkinsons~diabetes~SIADH so is trying to mitigate damage

He's also well aware of SSRIs causing depression so I feel thankful that I didn't need to explain that

 

I'm searching for a PSYCHONEUROIMMUNOLOGIST who might also have insight but most are PhD researchers and not treaters ~scary that SSRIs are being investigated to treat immune problems due to their cytokine activity

Sometimes I wish I wasnt a big picture person

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Barb I understand your concerns - it can seem overwhelming, but I think we take a page from Gerard who is using his experience with the 12-step programs and use the idea of one step at a time.

 

I think you start with the sex hormones - when I first started them I felt better pretty quickly and had very little challenge getting them balanced. The the cream quit absorbing and I had to find a different doc to try sublingual troches - I had a bit of a rough patch getting that balanced, but not too bad compared to getting off of ADs.

 

Next make sure your adrenals are supported. My patient advocate group recommends taking average daily temperatures and plotting those on a graph (http://www.drrind.com/therapies/metabolic-temperature-graph#directions). Average daily temperatures that vary by more than .2 degrees indicate that the adrenals are not supported.

 

Next work on optimizing the thyroid treatment - we optimize thyroid last. If you've ever read the insert that comes with your thyroid treatment you will find that it says that adrenals must be stable before treating with thyroid.

 

If there is something out of whack with your hormones I think you'll find that as you begin to get those balanced you will begin to feel better and better. I've actually experienced JOY for extended periods ... and that was while I was in the process of weaning off of Effexor :) .

 

I think your on the right track and there is hope.

 

Karma

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Will post details later but YES I am in ovarian failure (FSH =190+) and fatty liver disease and pre-diabetic

Got Armour -missed your comment on the change in product - and also low dose estrogen patch and oral progesterone

Diet for the pre-diabetes and possibly metformin or an herb

Drew blood for Celiac and something else --so many tests --WHEW

Adrenals 'looked' ok but I dont feel ok w that given my huge weight loss over 10 yrs

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Karma ~

I just caught the part about feeling better after 6pm and wondered if you might direct me to any info on that --describes me exactly

Also about a month ago I noticed I have an intense hot flash at 6pm every day --varies occasionally and hits at 7pm

It reminded me of the regularity of the early morning cortisol awakenings especially since ive never had hot flashes even though I'm past post menopausal according to TSH level

 

Im just curious about the early evening surge •

THANKS

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Hi Barb,
 
You can check out
http://www.stopthethyroidmadness.com/adrenal-info/

https://eaware.org/adrenal-glands/#The_Adrenal_Glands

http://www.stopthethyroidmadness.com/adrenal-info/

Another patient advocate site I have found very helpful is http://health.groups.yahoo.com/group/NaturalThyroidHormonesADRENALS/

However, in my experience it isn't a hot flash or surge that occurs in the evening, it is simply that i have more energy and can think more clearly ... what i've found is that this is directly related to having higher cortisol in the evening. the other side of this for me is that it usually means i have difficult sleeping. i'm not sure this is the same thing that you are experiencing.

http://health.groups.yahoo.com/group/NaturalThyroidHormonesADRENALS/... if you chose to join the site you can post your own questions and get answers.
 
I am not a medical professional, only a patient sharing my experiences and the things that I have personally found helpful. It is ideal if you can find doctor who can work with new ideas and information that you can find on these patient advocate sites.
 
Karma

Edited by Altostrata
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Is there a connection between withdrawal and thyroid problems? I have thyroid nodules.

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I haven't seen any research or studies that identify a connection between withdrawals and thyroid problems. Since antidepressant withdrawal isn't widely recognized you wouldn't see any studies identifying the connection.

 

Personally, I believe that undiagnosed thyroid problems result in depression symptoms that are often treated incorrectly with antidepressants. So it is possible that you already had an underlying thyroid problem, but were treated with antidepressants.

 

I'll do some research - there may be some research that antidepressants affect the endocrine system and if that is the case, that is the connection you'd be looking for. The problem is that once you've experienced antidepressant withdrawals you will need to be very careful starting any thyroid treatment. Your system will be hypersensitive and your doctor may not understand how slowly you need to go.

 

Are you currently being treated for hypothyroidism? Are they doing anything about the nodules?

 

Karma

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Thank you so much. I'm seeing an Endocrinologist who just wants me to get yearly thyroid ultrasounds to keep an eye on the nodules. Maybe I should get a second opinion. I feel like my body is falling apart and it all started after I got off antidepressants so I thought maybe there was a correlation. First I got diagnosed with Hashimoto's then Polycystic Ovarian Syndrome and now they want me to get a spinal tap to check for MS and Lymes.

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Are there natural remedies to help this? I can't get doctors help. My doctors don't take me seriously about ANYTHING anymore and I give up. I saw a doctor for medical marijuana prescription, and while she couldn't help me, she said that just looking at me and by my symptoms she would bet anything that my thyroid is too high. She said my eye is bulging and my neck is puffed. And it is. I have nearly all the symptoms and I wonder if all my troubles with pain are from this. I don't know what to do. My labs, twice, were normal. I can't see any other doctor because I don't have the money.

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Thank you for starting this thread Karma.

 

I'm grateful for your experience and the help you've provided the board.

 

Thanks.

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Are there natural remedies to help this? I can't get doctors help. My doctors don't take me seriously about ANYTHING anymore and I give up. I saw a doctor for medical marijuana prescription, and while she couldn't help me, she said that just looking at me and by my symptoms she would bet anything that my thyroid is too high. She said my eye is bulging and my neck is puffed. And it is. I have nearly all the symptoms and I wonder if all my troubles with pain are from this. I don't know what to do. My labs, twice, were normal. I can't see any other doctor because I don't have the money.

 

Shanti -

Just clarifying what you mean by too high thyroid - overactive (possible Graves Disease) or high TSH which would indicate HYPOthyroid -

Bulging eyes go with hyperthyroid and body pain and neurologic symptoms are related to thyroid although I'm not if hypo- or hyper- or both -

There are nutritional products that claim to support thyroid but I'm not familiar with them or potential dangers -

I feel your frustration -

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Are there natural remedies to help this? I can't get doctors help. My doctors don't take me seriously about ANYTHING anymore and I give up. I saw a doctor for medical marijuana prescription, and while she couldn't help me, she said that just looking at me and by my symptoms she would bet anything that my thyroid is too high. She said my eye is bulging and my neck is puffed. And it is. I have nearly all the symptoms and I wonder if all my troubles with pain are from this. I don't know what to do. My labs, twice, were normal. I can't see any other doctor because I don't have the money.

 

So this is the reason that there are patient support groups ... many of us have had the same sad experience with doctors. Barb's questions are right on the money ... is your thyroid producing too much thyroid hormone (hyperthyroid) or is it not producing enough leaving you with hypothyroid symptoms?

 

You can join http://health.groups.yahoo.com/group/NaturalThyroidHormones/ or http://health.groups.yahoo.com/group/NaturalThyroidHormonesADRENALS/ for some guidance on what you can do on your own ... I personally have a great relationship with the Adrenals group and find their recommendations to be better than any doctor's recommendations.

 

Also go here https://eaware.org/thyroid-gland/#graves to learn more about Graves disease - can you see an eye doctor? You might be able to get support in a diagnosis with the support of an eye doctor.

 

Karma

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Oh yes, my mistake. She said underactive thyroid. Thank you for the links. I'm checking them out now.

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Is there a connection between withdrawal and thyroid problems? I have thyroid nodules.

 

Hi Crista, still researching ... I've reached out to my mentors to see if they can point me to some specific information that is credible.

 

Karma

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Is there a connection between withdrawal and thyroid problems? I have thyroid nodules.

 

Hi Crista, still researching ... I've reached out to my mentors to see if they can point me to some specific information that is credible.

 

Karma

 

 

Thank you so much, Karma! I really appreciate you taking the time to help.

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Good article w link to this site -

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I did find this information indicating that Prozac may cause hypothyroid symptoms: http://doublecheckmd.com/EffectsDetail.do?dname=fluoxetine&sid=12162&eid=1359

 

But I really couldn't find any other valid research about withdrawal symptoms causing thyroid problems, but I did find this interview with Dr. Shames supporting my theory that many people who present with depression are actually suffering from hypothyroidism.

 

http://thyroid.about.com/b/2011/08/15/antidepressants-thyroid-depression-shames.htm

 

I'll keep my eyes open for any more information.

 

Karma

 

Thank you so much!

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In reading I've seen certain raw vegetables can be problematic, including cabbage.

 

Anyone know if that extends to fermented varieties like sauerkraut.

 

Alex

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Thanks Karma,

 

Appreciate it greatly.

 

I get to see the rT3 doc tomorrow to discuss my case. I'm curious what she'll say. But again, thanks for the help.

 

Alex

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Hey Karma,

Have you read anything by Datis Kharrazian? Other alt health bloggers seem to hold him in highest regard, "master diagnostician" said Chris Kresser.

 

http://thyroidbook.com/blog

 

Evidently though there is some controversy. It appears he trains practioners at seminars and then they use his protocols which supposedly require large commitments in time and money.

 

I've been reading his book. Lots of interesting stuff, lots of supp recommendations ... too bad I'm in w/d, though I may try gently with them anyway. Also, it's silly to say too bad I'm in w/d b/c if I wasn't all crisscrossed from psych drugs I highly, highly doubt I'd have suddenly developed thyroid problems which are "rare in men", particularly under 35 yrs.

 

Alex

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Hey Alex,

 

I haven't read that book, but I've seen it mentioned on the forum. Supplements can be helpful, I've had good success with them. But I do find that I have to start them slowly and only change one thing at a time.

 

Karma

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