I don't see many people talking about their immune issues with their hypothyroid problems so I am never entirely sure how much my immune issues ARE down to the thyroid. I have repeated problems with what feel like a kind of cold virus but it rarely comes out into a full blown cold. I feel very tired for some days while it's coming on, and I usually have a kind of soreness in the nasal area.
Last year I thought it was improving, and I get help from a herbalist and take a range of supplements. This year things are going downhill, and I am wondering if the changes I am being asked to make are contributing. From being T3 only for 4 years (55mcg - 17 yrs T4 only before that), I am being asked to slowly phase in T4 until I end up with 20mcg T3 and 75mcg T4. So far I am taking 40mcg T3 and 25mcg T4 so not an enormous change yet - just 6 weeks in on this.
I don't want to go into the background too much in this post as I have talked about it in the past and it's complicated, but I am trying out the change of thyroid meds due to developing osteoporosis while on T3 only, and there is a chance that it contributed (I know the pros and cons with patient groups not agreeing with the consultants on the TSH issue in particular but also the FT3 which was high because taken close to dosing). So far there is no question of them taking T3 away altogether.
I cannot blame the T4 completely on this problem as I did continue to have it while on T3, but it did improve last year, and I don't entirely know why as now I have it back again. I am using progesterone to try and help with my chronically low cortisol issues - not desperately low just chronic (3 saliva tests over 4 years) and using this has improved my chronic migraines so it must be doing something useful. My DHEA was normal in the 3 tests I had.
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Thank you Clutter. I was really talking about immune problems rather than autoimmune, but I have autoimmune hypothyroidism, plus Lichen Planus (although that is under good control). I guess I wondered how many other people have issues with low immune system when they have underactive thyroid, or do the 2 not go together? Mine seem to.
I had my immunoglobuins checked 2 years ago and I had low IgA and my IgG was very low in range so I am guessing that I have a chronic problem. Also at the time my lymphocytes were low too and some other minor things on the full blood count were low.
It actually improved last year for the first time in years, and my numbers were up which confirmed it. What I can't be sure was the reason for that.... was it due to the the T3 only (but I had by then been on T3 only for 3 years and the immune system didn't improve for a while). Or was that coincidence? I guess I need to know as I am being taken off the T3 only and put on T4/T3 due to the osteoporosis issues which they think may have been caused by my suppressed TSH/high FT3.
90% of hypothyroidism is caused by autoimmune thyroiditis (Hashimoto's) and having one autoimmune disease apparently predisposes us to others.
If you use the Search Thyroid UK function and type "IgA" and "IgG" you'll see posts on immune problems.
I'm not sure why T3 only would improve immunity any more than Levothyroxine or combination or NDT.
Suppressed TSH/high FT3 is known to reduce bone density which is why it is recommended that FT3 remains within range. TSH can be suppressed and FT3 high when taking T4 or T4+T3 too if overmedicated.
I was diagnosed with osteopenia in 2014 but I doubt 2 years of suppressed TSH was responsible and suspect early menopause <42 and severe vitamin D deficiency are likely culprits.
Thank you Clutter, yes, as you say, I remember being told by the person who was investigating the LP about the likelihood of getting more than one autoimmune disorder once you had one. Until that point, no one had ever mentioned to me that underactive thyroid could be autoimmune! I suspect that's true for many though....
Thank you, I will try the search facility on the IgG and IgA issues.
My thoughts re the T3 being more likely to help the immune issues, are simply based on the possibility that I have a problem in T4 getting into my cells. I was on T4 only for 17 years and ill with the immune issues for much of that time. Admittedly I didn't improve immediately I was on T3, so maybe it's a tenuous argument. There are various thoughts about why people might not get enough T3 into their cells - I particularly like the article written by Kent Holtorf on the subject of Thyroid Hormone Transport restorativemedicine.org/jou...
As I am diagnosed with CFS plus have had Dr Myhill's testing on my mitochondrial function which showed well below range (twice) I feel that may be a reason for my lack of function as KH suggests in his article.
With regard to the suppressed TSH/High FT3, it's not so simple. It would be unusual for someone on T3 only as I was for 4 years NOT to have suppressed TSH. I was only on 55mcg over the day, so not a high dose. As for the high FT3 well there is dispute on that too. I got caught out one day at hospital shortly after I had taken my middle dose of T3 when they tested me, and of course it was above range. Straight after I had the test done privately leaving about 18 hrs before my test (last dose was around 5.30 pm the day before) and it was below range for that test. The Endos do not accept this though and believe they can test FT3 whenever and it should still be below range.
Incidentally, I had no signs of being overmedicated during the 4 years on T3 only - low BP, low temp, and normal pulse rate.
There are, as I am sure you know, numerous reasons for osteoporosis. In your case, yes, early menopause and low Vit D are most likely. I know my Vit D was fine for at least 5 years, (I had a private test done) and my menopause at 49 was not very early. It is difficult to know for sure what caused my osteoporosis, and I did have a private ultrasound heel test done 2 years before I began T3 only, which showed low risk of -1.1 so my recent DEXA of -3.2 in 2 places was a big jump unfortunately. As you can imagine, the Endos, have drawn their own conclusions on it.
I was commenting on information that you gave me ie suppressed TSH and high FT3. You didn't say FT3 was high once, shortly after taking T3 before a blood test. If FT3 was otherwise within range then you didn't have high FT3. Endos do say suppressed TSH can cause osteoporosis and heart problems. If you accept that it is suppressed TSH causing osteoporosis then reducing dose so that TSH eventually rises may be the right thing for you plus weight bearing exercise which I believe improves bone strength.
My endo wants my TSH less suppressed than <0.01 and has said she would prefer it around 0.05. A dose reduction in 2015 and 2 x reductions in 2016 have not budged my TSH and I've refused further reductions. I'm awaiting an appointment for a repeat DEXA scan.
I was searching for another thyroid issue, when I found your post of 2 years ago mentioning your ME diagnosis. Often Lyme disease is mis-diagnosed as ME. As you have many other health issues which can also be Lyme (Borrelia plus many co-infections including Hypothyroid) symptoms, it could be worth seeing a Lyme symptom checker. Last time I looked there were over 40. There is a lot of mis-information online & in the NHS, however, plenty of good information available on some Face Book groups.
I was mis-diagnosed for 10 years, then had a Private blood test. Treatments for the next 10 years to get the bacterial load down, slowly recovering over the last 2 years.
Thank you Lifelong, and I am glad to hear that you have now been diagnosed and being helped to get over Lyme Disease. I know how difficult it is to get a diagnosis and have followed some articles about it over the years.
However I don't believe I do have Lyme. Admittedly I have not been tested, but the majority of my symptoms do not ally with the main ones that I have checked out (other than things like fatigue of course and a few others that are common to other illnesses). I suspect that my immune system was compromised as a child as I was often ill then, but did go through period in my 20s and 30s where I was much better. I think that my symptoms are those of autoimmune illness - I have 2 known and I had another in pregnancy many years ago.
I know that mainstream medicine is not really recognising the amount of Lyme illness around, and I am sure, like you that there is a proportion of those with ME/CFS who do have Lyme. There was a call in programme today on Radio 4 on CFS/ME and one of the callers had been misdiagnosed. It must be a long job to put right after having it for so many years.
Hello again Clutter. I seem to remember that you are on T4/T3 mix? That is very frustrating re the TSH issues you have. How much T3 are you on out of interest? My new Endo wants me to slowly add in T4 and reduce T3, and keep checking the TSH of course and get a similar result to yours, in the sense that they want it IN RANGE low rather than out of range entirely. Locally they seem happy to allow 20mcg T3 to 75 mcg T4. So far I am only 6 weeks in and just on 25mcg T4 and 35mcg T3. I am feeling quite unwell with the immune issues, and pain in my knees that I did not have previously - maybe I am jumping to conclusions though.
One Endo I saw was insistent that it was possible to take T3 with T4 and not have a suppressed TSH, but I am guessing that the amounts of T3 were tiny. It seems to me that taking T3 does suppress the TSH. I often wonder about those others on T3 only, (I used to be on Paul Robinson's FB T3 forum and other thyroid forums) but they all protest that they do not have osteoporosis. Without a DEXA you would not know though......
I don't think I can do any more weight bearing than I am already doing. I do quite a bit of gardening in the summer, plus dancing once a week. As I have CFS and wonky knees I am limited in this direction, and cannot walk for long distances, but I am fairly mobile in short bursts. I take an array of supplements having researched them for osteoporosis, as I do not want to take bisphosphonates.
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