I've got an endo appointment shortly and I think I know already how it will go.
I've just found out my latest result is:
TSH 0.18 (very low in range I think)
FT4 6.4 (under range)
The lab refused, once again, to test FT3 which, as I take 30mcg a day, is insanity. But I paid privately a few months ago for the FT3 test and it was also woefully under range, with similar TSH and FT4 results as above. They still told me I'm overmedicated because of the TSH.
At my last appointment, several months ago, the endo told me I was over medicated because all that matters is TSH. I tried to argue that this was rubbish, in a polite and scientifically informed way, but she wasn't having any of it.
I have no faith and I don't know what to do. A new GP recently told me the only explanation for my results is that I'm not taking it properly. I nearly cried. This has been going on for years and I've still got all the hypo symptoms I started with.
Are there any advocates who have good credentials and would be able to support me in future correspondence or at appointments? I would be happy to pay for such support.
I'm desperate.
Many thanks
K
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Kitty1watson
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Do you normally split the dose into 3 x 10mcg spread through the day?
You need to get FULL thyroid and vitamin testing done
Invariably that’s via private testing
Ideally always get full testing done BEFORE consultation
Is your T3 prescribed or are self sourced
On just T3 you obviously need TSH, FT4 and FT3 tested together
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 (and last dose levothyroxine 24 hours before test)
On T3 day before test split daily dose into 3 smaller doses, spread through the day at approx 8 hour intervals, taking last dose 8-12 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Hello, I did have some private testing a few months ago but will try and redo.
I've had the main vitamins done recently (last week), as above, B12 is low but in range (but I take prescribed B12), D3 is low, my hormone panel was "normal" but she didn't go into details, DHEA very low, she told me to buy it online.
I have been diagnosed previously with an autoimmune condition related to my connective tissue (it is very like Sjogrens in symptoms, but has been called an undifferentiated connective tissue disorder). I've just restarted hydroxychloroquine to try it again. It didn't seem to help last time but that was before my thyroid diagnosis.
I'm not sure about thyroid antibodies but I'm gluten intolerant (and soya), have the autoimmune condition and a family history of autoimmune issues). I had gestational diabetes but am apparently OK now.
I'm prescribed 200mcg T4 and 30mcg T3. My results latest are (and they're around the same as they were when I had it done privately 6 months ago):
TSH low in range 0.18,
FT4, very under range 6.4 (9-19 I think) and
FT3 (last tested privately about 6 months ago) very under range (I can't remember the figures off the top of my head, but the endo accepted it was well under range).
Hello, yes, so B12 was around 390 in a range of 188-890. I am prescribed 100mg a day and bought sublingual ones to try but have only started that in the last couple of weeks. I haven't taken any D3 in a while. It was 25 I think, so way too low and I've ordered some online. They said the other tests (iron etc) were "fine" but didn't give me the results. I don't take B complex or anything else.
I was swapped from B12 injections to tablets because of covid and have had real issues with getting them back. A GP told me about a year ago that if my B12 levels dropped further (from 425), it meant I was not absorbing and would need injections again. The next test had dropped to 380 and he then said "oh, it's fine it's in range". I got no response when I asked why it was now OK when 6 months ago he'd said I'd need injections of it dropped again.
And thank you. The endo just told me to buy the lowest dose D3 which I thought couldn't be right. I did try the spray a while back, but forgot to order it again and life took over. I'll try and order a few bottles. It's just the overwhelming cost that mounts up, what with buying D3, B12, B complex, K, magnesium, and now she's told me to buy DHEA (which is another issue, I know!!). I also take a probiotic and have to buy £50 worth of vitamins and probiotics for my three children every month (they've got CMPA and IBS).
My own GP (grudgingly) recommended I get in touch with someone who went private and is a specialist in women's health. He said she's the only expert in Cornwall but she charges £250 for the first consultation. I got the impression the NHS hates her because she's private and there is, quite literally, no one else. They still pay her to do internal training, though!
Poor gut function with Hashimoto’s can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but a further 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal
Before considering trial on gluten free diet get coeliac blood test done, ideally via GP ….FIRST just to rule it out
If you test positive for coeliac, will need to remain on gluten rich diet until endoscopy (officially 6 weeks wait)
If result is negative can consider trialing strictly gluten free diet for 3-6 months. Likely to see benefits. Can take many months for brain fog to lift.
If no obvious improvement, reintroduce gluten see if symptoms get worse.
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Re coeliac test, I haven't eaten gluten since 2007. The endo arranged a coeliac test anyway and told me to eat a small amount for 7 days. That horrified me in itself, but I later learnt it should have been for 6-12 weeks for the test to work. Unsurprisingly it came back negative and no amount of my saying "but I don't eat gluten" has made them reassess their view that I'm not coeliac.
The children haven't been tested but get awful stomach cramps and either constipation or diarrhoea (depending on which child!) if they eat gluten or dairy. One has been diagnosed with ibs but I think his twin sister may be the same.
I'm not strictly dairy free but can easily do that, as the children are.
If B12 still low request/insist reinstate B12 injections
Vitamin B complex
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial. This can help keep all B vitamins in balance and will help improve B12 levels too
Thorne Basic B or Jarrow B Right are recommended options that contains folate, but both are large capsules. (You can tip powder out if can’t swallow capsule)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
If serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
Kitty are you taking T3 only or in combination with T4? Maybe you need to be taking ONLY T3. Are you still in South west? Is your "thyroid" Consultant there? Likely to be a diabetes specialist. A consultant who really knows about thyroid issues ought to be able to solve your problems. Have you contacted TUK about recommended Thyroid consultants?
I take 200mcg T4 and 30mcg T3, both prescribed. Over the last few years, I've tried adding Thyrogold and T3 bought from Europe, but nothing has changed. I have the same symptoms and don't notice any difference, regardless of whether I'm taking way in excess of my prescribed medication or not. I've been overweight for 10 years. My hair is dry and brittle, my skin is dry and itchy, I'm tired, a bit foggy, constipated more often than not, my eyes are dry, my mouth is dry.... they've referred me back to Rheumatology, who couldn't help me a decade ago when all this first started.
I went back on the progesterone-only pill (Cerazette) recently, which has had a remarkable and immediate impact on my migraines (reduced from 6-8 per week to pes than 1 per week). I think it might have also made me less tired.
The endo today said nothing at all in response to my question, "what are we going to do to get my thyroid results in range?"
She said, "There was one blood test in 2019 when your results were OK. So we got it right once."
Um, OK.
She told me my B12 was a little low (I am prescribed B12 tablets) and the GP told me 30 minutes beforehand that the level was "OK". I know it isn't. My D3 is low so I need to add 10mg (she said that's the lowest dose so suspect I might need more, I will look into it).
She also said my DHEA is suppressed so I need to buy it on Amazon. I asked "and will that help my thyroid?" She just said, "No."
She is going to ask the lab to test my Ft3 but not sure if I need that blood test re-run or if they'll still have the blood left over. She had nothing to say about my Ft4 of 6.4 (I think the range is 9-19), other than, "well you're already on 200mcg T4 and 30 of T3...." She said that was the max.
Sorry I didn't answer everything. I'm in Cornwall and see someone at Treliske. I tried someone in Plymouth but he discharged me when I became pregnant with twins in late 2018, saying he couldn't deal with pregnant women, so I needed to see an obstetrician with an interest in thyroid. That person doesn't exist, so I saw no one for my whole pregnancy.
I'll ask again about other consultants, although I'm not able to pay a huge amount at the moment, so I may have limited options. We pay the same amount as our mortgage every month for the twins' nursery places (for 3 days a week) and that won't end until September. So we're just about treading water and have not much spare cash.
The wonders of the NHS never cease to amaze me. No consultant to care for you during your twin pregnancy, it beggars belief. It really is so wrong that getting good treatment is dependent on having the money to pay. I do hope you get some answers soon. Sorry, but I gave no suggestions how things might improve.
I'm just grateful for your taking the time to respond. Perhaps when we receive childcare funding after our twins turn 3, I'll start to save up for private help!
200mcg T4 and 30mcg T3 is quite a large dose of thyroid hormone for both your ‘frees’ to still remain under-range, with periods of adding further T3 and some thyroid glandular. When we go over our sweet spot thyroid hormone can start working against us and make us feel extremely symptomatic.
I don't think your endo knows what she is doing and I would suggest as crimple has already that you look to another from the ThyroidUK list of endos that members have had good experiences with.
Also DHEA is commonly low on this forum as is the third stage of adrenal fatigue. However, if your endo told you to supplement DHEA bought from the internet she is suggesting you do something illegal as DHEA is a controlled drug in the UK. DHEA & cortisol are the body's long-acting stress hormones & are antagonistic to each other (to some degree). Ask that if she considers it needs replacing that she prescribes it for you.
There is a drug available for prescription described in the BNF - the British National Formulary - called Prasterone. Its uses (as a prescribed drug) are extremely limited.
The BNF has this to say :
Prasterone is biochemically and biologically identical to endogenous dehydroepiandrosterone (DHEA), and is converted to oestrogens and androgens.
and if you check the list you'll see that DHEA is listed in it under the name Prasterone.
I think the banning of DHEA supplements in the UK is ridiculous. It is available in some other countries over the counter. Some people in the UK do buy it online, but personally I would be worried about having it confiscated or being fined for importing it.
Radd, I had similar thoughts to you about kittywatvans and the high doses, but not sure enough of my facts. Also the DHEA issue. It didn't seem right to me that an NHS endo should tell kittywatvans to buy her own from the internet. An endo clearly out of their depth.
Yes, I'm shocked that it's not legal and looked it up to check it was definitely DHEA that she'd recommended. I mean, I knew it was, as I take notes as people speak. I asked her to repeat the name of the supplement so I could write it down and it's here in front of me. But it did make me pause when radd said it's not legally available without prescription.
She definitely said DHEA and explained that it's an adrenal hormone that declines after age 40 but mine was particularly low. She said it would help with energy and low libido (we've never discussed that and I've not asked for an increase to my sex drive, so that was a weird discussion to have suddenly!). Having looked it up, it's confirmed everything she said about it so I'm in no doubt she told me to buy DHEA "from Amazon or somewhere."
< edit this reply is to kittywatvans ,my apologies to Kitty1watson, i did not notice it wasn't you we were all talking to, for obvious reasons . >
Surely they should be investigating how you can take 200mcg Levo (+ 30mcg T3) and still have such low T4 (and T3) results.
I hesitate to write this because i don't like writing things that encourage people to have a worse relationship with their Doctors /Endo's than they already have.. it doesn't help anybody .. BUT, i think you should consider the following , if you haven't already thought about it .
It seems to me , that the the recent GP who said :"the only explanation is you're not taking it properly" .... and the Endo who said "you're on 200 + 30 that's the maximum" , may both have formed the opinion that you ARE taking it , but then deliberately not taking it for a few days before tests in order to be prescribed more. (hence your TSH remaining low from previous doses , but fT4 (&fT3) being below range on Tests )I say this . not because i think you are doing this, i don't think that , but i suspect THEY might .... because i have read an awful lot of teaching materials/guides for clinicians on the subject of "What to do about unexpected or confusing TFT's" .
........ and ALWAYS , the number one explanation for 'unexpected results' which are the other way round to yours ( very high TSH /in range T4) is that they assume the patient always forgets / cant be bothered to take their levo for most of the time , and only 'remembers' to take it properly for a day or two before a blood test. (meaning their TSH remains very high , while their fT4 is raised to normal by the recent dose) .
They are usually advised to investigate this possibility using an 'observed' test ( they don't tell the patient exactly 'why' they are doing it)
This scenario is usually discussed at great length, long before anything to do with 'poor absorption' is even mentioned as a cause for the TSH remaining so high on a 'higher than expected' dose of Levo .
So IF they think something like this is what's going on with you .... (ie, taking it usually, but then not taking it for a few days before the test giving low TSH / low fT4) .... they will have decided to 'ignore' your fT4 and fT3 blood results and just look at your TSH , and will absolutely refuse to prescribe any higher dose , because they've made an assumption that your 'real' fT4 and fT3 are not low at all, when you are taking it as you 'usually' do .
If i was in your position , i would (carefully) call them out on this .... remain very calm , but ask for "proper investigations into how come your fT4 can possibly remain so low on 200mcg Levo" .. (the usual way they investigate this is have you take the Levo under 'observed' conditions , and then test the blood at intervals afterwards) .... say you are perfectly willing to do a controlled blood test to have your low T4 on 200mcg Levo properly investigated .
Hopefully , once they have proof that taking 200mcg levo still leaves you with below range T4.... it may hopefully lead to some further action ? or at the very least it deals with the 'not taking it properly' comment.
<edit kittywatvans this reply probably doesn't make sense, because i have confused your details with those of the person who asked the original question, apologies ,but as you see this can easily happen if detailed questions are asked on somebody else's post, even if they don't have nearly identical names >
You have replied to the original poster Kitty1watson, but your reply refers to kittywatvans (totally different member). I made this mistake too because kittywatvans joined the discussion with her own story and questions that we have all mistaken for the O/P (similar name).
Both are medicating 30mcg T3 but kittywatvan also takes 200mcg Levo. Very confusing post with poor O/P Kitty1watson ignored by all! Big apologies Kitty1watson 😊. Please repost for members to re-view your question.
kittywatvans - for mulitple own questions it is more polite to start your own post rather than hijacking someone elses 😊
Thankyou radd.. , and yes Kitty1watson . please post your question again on a new post and we will talk to you instead ... i did wonder where the extra 200mcg Levo came into it as you didn't mention any Levo in your question... but the name of the other person looked so similar to yours i didn't notice it wasn't you . apologies for the confusion on your post.x
No they're both me, but I've no idea how it's swapped my accounts. I got locked out of one and rejoined the site as a result, but I hadn't realised it had swapped me over. I couldn't get on the site earlier today as it said it was under maintenance and it was only once I got back in that I saw a notification saying I'd replied to myself!! I thought one of those accounts had been locked!!
Sorry, see my other reply. Both me, and I don't know how it has swapped the username, especially as I had to rejoin as I got locked out of my original username some months ago.
I'm not hijacking anything, there's been some weird goings on with my old and new usernames. They're both me. I thought one was locked permanently hence having to create a new, almost identical, one. I don't know why my replies were posted under my old username.
That's a very interesting theory, thank you. I will ask the doctor about this, definitely. I usually just book my tests in the morning and then take my medication after that, so I haven't had it that morning.
I've sent a few emails now, to private consultants, asking for quotes and will see what they say.
Thank you and sorry again for the weird username switch. I don't even know how that happened!!
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