Please help me/give me some advice - I'm at my wit's end! I'm looking for recommendations of a good Endocrinologist in Edinburgh who you've had a good experience of?
I have all the classic symptoms of hypothyroidism so had some thyroid function tests carried out. Test results have come back as:
TSH: 1.4 (low, but still in "normal" range)
fT3: 3.99 (OK)
fT4: 9.0 (low and very bottom of "normal" range in Scotland, below England "normal" range)
My GP has said these results are "normal" and left it at that, but I just have a gut feel there is something else going on and the way I'm feeling is definitely not "normal" for me and has been getting progressively worse for the best part of a year, maybe more.
Would these results be consistent with a pituitary dysfunction problem? Any advice for what tests which might help to pinpoint a potential causes for my hypothyroidism symptoms would be much appreciated (even if this only leads to being able to rule some things out)!
Also any Edinburgh based members, please private message me with suggestions for a good specialist consultant who has experience with this kind of issue!
If you've read this far then you've already given me more time than my doctor did so thankyou
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I would read up on Central Hypothyroidism to see if that is where your problems lie. I know very little but the gist is that the pituitary is not stimulating the thyroid so FT4 drops and TSH remains low (rather than getting higher as it normally should).
You may need to be your own advocate for this and become pushy - medics are not good on thyroid so we have to learn as much as we can and 'guide them' if they will listen.
Re the ranges. Don't compare ranges from different areas of the country. The range is set by the testing lab based on their equipment and samples from the local population. They are lab and area dependant.
Thanks for clarifying re. the ranges. It was actually my GP who told me about the "normal" ranges being different in Scotland than England so shows how good their knowledge is on thyroid issues! I get having the lab differences based on different equipment, but area differences based on population samples doesn't make sense? Why would you have a lower/higher range just because that's the average for the people in the local area?! And what if you moved to a different area?
Thanks for the views on Central Hypothyroidism too. I was starting to suspect that after doing more research. Particularly because I've had two sets of tests now and between the two my FT4 feel from 11 to 9 but TSH dropped from 1.6 to 1.4.. whereas surely it should have gone up to try to raise FT4?
BEFORE seeing any thyroid specialist endocrinologist we recommend getting FULL thyroid testing
What vitamin supplements are you currently taking?
If any?
What’s your diet like?
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Thank you so much for all this information. I should have said in the original post that I did my own private Medichecks blood test first before going to GP so have also had the antibodies test which was fine. (TPO = 9, TG = 12, interestingly my brother has recently been tested for thyroid issues and he DOES have the anti-bodies). My GP also did a vitamin B12 test and said it was "normal" but I don't know the number. Not sure I've been tested for follate, ferratin and vitD so I might order a private test to cover these and/or ask my GP again.
I'm not taking any supplements currently but I have bought complex B12 and vit D. I didn't want to start taking them until I'd done all my blood tests in case they skewed them. Should I just start taking these anyway?
Re. Diet. This is generally pretty good and diverse. I eat alot of fruit/veg/lean meats and don't overindulge in treats. Recently I tried intermittent fasting in an effort to try boost my metabolism and lose weight. I tried a few different combinations 16:8, 5:2 etc. I even got to the point where on or two of my fasting days on the 5:2 I fasted (only drinking water and zero food/calories) for 36 hours straight and didn't even feel hungry in that whole time! So I think my metabolism is waayy to slow
fT4: 9.0 (low and very bottom of "normal" range in Scotland, below England "normal" range)
It doesn't matter what the English range is, or any other range, the only range that is relevant is the one that comes with your results because ranges vary from lab to lab.
What is the actual range?
If it starts at 9 then your result of 9 can suggest Central Hypothyroidism. This is where the problem lies with the hypothalamus or the pituitary rather than a problem with the thyroid gland. With Central Hypothyroidism the TSH can be low, normal or slightly raised, and the FT4 will be low.
TSH is a pituitary hormone, the pituitary checks to see if there is enough thyroid hormone, if not it sends a message to the thyroid to produce some. That message is TSH (Thyroid Stimulating Hormone). In Primary Hypothyroidism the TSH will be high. If there is enough hormone then there's no need for the pituitary to send the message to the thyroid so TSH remains low.
However, with Central Hypothyroidism the signal isn't getting through for whatever reason. It could be due to a problem with the pituitary (Secondary Hypothyroidism) or the hypothalamus (Tertiary Hypothyroidism).
Your GP can look at BMJ Best Practice for information - here is something you can read without needing to be subscribed (you can only read the Summary):
You could do some more research, print out anything that may help and show your GP.
As Central Hypothyroidism isn't as common as Primary Hypothyroidism it's likely that your GP hasn't come across it before. You may need to be referred to an endocrinologist. If so then please make absolutely sure that it is a thyroid specialist that you see. Most endos are diabetes specialists and know little about the thyroid gland (they like to think they do and very often end up making us much more unwell that we were before seeing them). You can email Dionne at
tukadmin@thyroiduk.org
for the list of thyroid friendly endos. Then ask on the forum for feedback on any that you can get to. Then if your GP refers you, make sure it is to one recommended here. It's no guarantee that they will understand Central Hypothyroidism but it's better than seeing a diabetes specialist. You could also ask on the forum if anyone has been successful in getting a diagnosis of Central Hypothyroidism, possibly in your area which you'll have to mention of course.
Thank you so much for the detailed information and links. In my own research I was starting to think it must be related to my pituitary as my TSH fell from 1.6 to 1.4 despite by FT4 falling from 11 to 9 between tests. The range for my FT4 given is 9-22 so 9 is the lowest possible "normal" result. Trouble is I have no idea what "normal" for me is... I'm going to try getting all the vitamin tests carried out and do some more research on Central Hypothyroidism before going back to GP.
Your TSH is not low, it is actually a little higher than the majority of healthy people. It's not really possible to comment on the others without the lab ranges - there is no such animal as an "England" range or a "Scotland" range - it's the range of the machine in the lab that did the test. However both FT4 and FT3 look low in any range in UK units
Thanks for your comments. It was my GP who mentioned the England/Scotland range to me which shows how little they knew about thryoid issues and how naive I was to trust them! Yes, I think my TSH level in itself is heathly but not with such a low (and falling fT4 result. So I think my issue must stem from the pituitary gland and not the thyroid and that my problem is in producing/sending signals to create TSH rather than my thyroid dialing to create more FT4.
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