Hi all, I am new to the forum after doing a little research following some blood tests.
I have been suffering a range of complaints which had been put down to mild anaemia and just life generally. Bloods in 2018 showed low ferritin and unexplained high cholesterol. I’m unable to tolerate iron so I am not on medication and although my diet doesn’t contain many fats I was told I should watch my diet. I’m in my late 30s so they did not want to entertain statins.
During a visit to India last week, I went to a private Dr (I used to live there) for two complaints I thought were unrelated - 1) frozen shoulder and body aches & cramps but 2) also concern about noticeable memory impairment in the past 3 months and increased exhaustion. He suggested thyroid tests. I said previous thyroid tests had come back normal but he added FT4 and FT3. Results as follows:
FT3: 3.23 (2.5-3.9)
FT4: 5.9 (7.9-14.4)
TSH: 1.174 (0.34-5.60)
I have an appointment with a Dr here on Friday to discuss the results(NHS). General articles I’ve read say central hypothyroidism is rare and not well understood so I’m half expecting the GP to reject the results. Even though my TSH is in normal range, all the symptoms I’m having seem to be textbook hypothyroidism. Based on your experience, is the Dr likely to treat me on the basis of these results so I can start to get some relief from this? I’m slightly worried by the number of people having to resort to private medical testing in the UK.
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Sindia
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Anything can be rare if you never test for it. And, the majority of doctors have never even heard of Central Hypo - especially not GPs. But, I don't think it's nearly as rare as they believe. Quite a few cases pop up on here.
I think the clincher in your results is the very under-range FT4. With an FT4 like that, your TSH really should be higher. And, as most GPs are only capable of looking at the TSH, they would probably pronounce you 'norma' - even though an FT4 that low is in no way 'normal'! You would have to fight for a referral to an endo.
But, chose your endo carefully! A lot of them have never heard of Central Hypo, either! And, most of them are diabetes specialist and know little about thyroid. Ask on here for recommendations for endos that know about pituitaries/Central Hypo. Put that in your title so that the right people read your question. But, replies would have to be by PM, as we're not allowed to discuss named doctors on the open forum.
Thanks, especially for the tip about choosing a specialist wisely (if the GP agrees this is necessary). I would have just gone along with the local hospital but I can see now that the individual Dr/unit also makes a difference. I will post an update/new post on Fri after my appointment.
I have a pituitary tumour diagnosed 7 years ago, but had hypothyroid symptoms for over 40 years despite What my endocrinologists insist are “normal” blood tests. I was diagnosed with fibromyalgia which has many similar symptoms to hypothyroidism but no effective drugs as nothing treats hormone deficiency other than replacement hormones. After much reading & checking my temperature (Barnes basal body temperature test) I started self medicating with NDT then added T3. There’s been a few hiccoughs, much tweaking of dosage & ratios, & trying different supplements to make the hormones work best to ameliorate my symptoms. I’ve reduced dosage since I started injecting B12 so think that deficiency was some of my issue, highlighting for me, the importance of cofactors. I just about feel I know what I’m doing though I’m prepared for some occasional setbacks if other health issues & meds interfere with my hormones.
Thanks for sharing your story. I’m truly surprised by the efforts individuals have to go through to get the right tests and diagnosis. I hope you are feeling better now and hope you get the support from the health system in the future.
Hi Sindia , I joined this forum when my first thyroid blood tests showed low levels like yours and the very helpful folks here suggested it might be central hypothyroidism. I'd been unwell for a while and had many tests, so the GP was pretty fed up with me by this stage. I had to get the blood tests done privately, and continue to do so as the lab will only test TSH and Free T4 even though the GP also requests T3.
My GP admitted that he knew little about thyroid problems and had not come across central hypothyroidism before. He was happy to prescribe 50mg Levothyroxine and referred me to local endocrinologist, but this is where the problems started. The endocrinologist explained to me that central hypothyroidism was rare, unlikely that I had it, and suggested stopping Levothyroxine and see how I felt. I wasn't very happy with the approach, so the GP referred me to a private endocrinologist, but I made sure this one was on the Thyroid UK list. I have to travel 2 hours each way to see him but it's worth it. He thinks I may have central hypothyroidism and first prescribed Erfa (which didn't make much difference) and then Liothyronine which I've been on for a few months and can see a difference.
I had already done a cortisol blood and saliva tests which showed low levels and possibly an adrenal problem. So I had a short syancthen test, and although I had low baseline cortisol to start with, I had a normal response to the test. I've had other pituitary tests and these have been normal too, albeit at the bottom or top of the range.
But it can be difficult to diagnose central hypothyroidism once you start on thyroid medication. And it's treated in the same way as primary hypothyroidism. If you can possibly see an endocrinologist from the Thyroid UK list that would be a great start as hopefully they should be knowledgeable about central hypothyroidism. I live in Devon so let me know if you live nearby and can give you some more info. Good luck with everything!
Hi, thanks for your message, it’s been really useful to read. I was searching for people with results close to mine to get some idea as to what to expect.
At the moment I’m so relieved the Dr I saw last week may have found the answer to my issues but what I’ve picked up is that it may be best in my case to try and get a referral to a specialist before starting any medication as my results don’t suggest primary hypothyroidism...
I live in west London so a bit of a distance from Devon! But I will start to look at which of the London trusts and hospitals have more developed centres which cover pituitary and adrenal issues as well.
Recommend also testing vitamin D, folate and B12. These are frequently too low when hypothyroid....as your very low Ft4 clearly suggests you are
Ask GP to test these plus BOTH TPO And TG thyroid antibodies
High antibodies would confirm autoimmune thyroid disease (Hashimoto’s)
If been hypothyroid for a long time, TSH can become unresponsive.
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 .
If/when you start on levothyroxine......Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
It can take several months on levothyroxine for TSH to start to respond
Dose Levothyroxine may need to be introduced very slowly and increased slowly
Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists
Hi SlowDragon, thanks for the advice about the tests. I do wonder whether they will want to re take the TSH and T4 tests again so I’ll bear the info about timings in mind.
I will also raise the link with the vitamins too. I had to take B12 injections a few years ago when my levels fell quite drastically so it’s interesting that that’s sometimes an indicator (they were normal when I tested last year).
Thanks for the link to find thyroid specialists... I hope my journey is a lot less stress free than others on the site. It helps those of us new to this to learn from others.
Hi Sindia, I've been in your position. It's desperately frustrating, and even after the wonderful Dr Skinner diagnosed and began treating me in 2002, no GP in my surgery has been willing to take over treatment because they can't get past the original test results.
As your FT4 is below range, yours should treat you. However, the ranges in the test you had done in India are different from those done here, so your GP will probably first order new tests, which must include FT4 and FT3, and you may have to insist on those two being done. When the results are back, make sure you get a copy and post them here for advice if necessary.
In case there's any problem - such as the new tests coming back low in range rather than out of range, or your GP only considering the TSH, or suggesting a referral to an endocrinologist - I have PMd you the details of the private doctor I now see. He understands these sort of results and will help you, and is not too far from the area you've mentioned. Several of us here now see him. Good luck!
The GPs refused to treat me because my results were just within range, so they said they were normal! Eventually, I put them all together, showed them to one GP and asked why they kept fluctuating, and why my TSH was at the bottom of the range as well as the FT4 being very low in the range. The GP admitted she didn't know how to read the tests, didn't understand them and went by the ranges the lab technicians sent her. At that point though she suggested I see Dr Skinner as another of her patients had got better on his treatment. So she knew what was wrong but just didn't dare to treat outside the guidelines. It's a good idea to ask for as many tests as your GP is willing to do, and make sure you get all the results too, they're always good to keep for reference.
I've just had my first GP appointment. She first made a beeline to my TSH result and said it was normal, so I pointed out that my FT4 wasn't! Although she didn't seem convinced by the possibility of secondary hypothyroidism (I asked her directly), she conceded the result wasn't normal and has asked for a repeat TSH and FT4 blood test as the ranges in my private tests are different. She said labs will only normally do TSH and will stop there so she will make sure she puts in a separate request for the FT4.
This is what I expected and to be honest I'd prefer they run the tests again here. The other tests she agreed to run were B12 and ferritin. She thinks my symptoms could be due to low levels of these rather than anything else. Hopefully all of them combined will help build a picture.
These are all booked for two weeks time so I guess I have to wait and see till then.
Hi Sindia, I'm so glad your GP is doing all those tests, they'll provide a good picture of what's going on. When you have the results do post them in a new thread, because several people here will be able to help a lot with explaining them and what you should do next, then you can take it from there. Good luck!
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