Can you buy t4? Or should I wait?

Hi,

Could anyone pm me where to buy t4 if you can? I think my t3 is OK. I'm just getting really bloody fed up now! My recent results done with bh were:

Dec:

TSH: 5.03 (0.27-4.2)

Free T4 14.52 (12-22)

Free T3 5.43 (3.1-6.8)

Jan:

TSH 4.77 (0.27-4.2),

TT4 77.2 (64.5-142),

FT4 12.57 (12-22),

FT3 4.96 (3.1-6.8),

ATPO ABS 80.6 (<34),

ATGO ABS 565.1 (<115)

Vit D (25 OH) 20 (<25 Deficient)

B12 238 (insufficient 140-250)

Serum Folate 8.31 (8.83-60.8)

My first gp dismissed them so I went to a new one who wanted to start me on b12 injections, folate and vit d first before trialling thyroxine.

I've had 4 injections now, 2 more to go. 5mg folic acid for 2 weeks and 20000 vit d twice a week for 4 weeks.

I don't really feel any different. I guess I'm sighing less and my periods seem to have come back to monthly but they're light like spotting and lasting ages!

I'm just getting really fed up now. My main problems are the weight gain and dry skin to the point I can't really put foundation on my forehead or to the sides of my nose because it just flakes off. It's getting me down and making me really demotivated to take the healthy option or keep trying to lose weight anymore because I know my thyroid needs treating.

She did say we could trial thyroxine if I didnt feel better from the supplements but she seemed reluctant. She certainly wasn't willing to start levo first or at the same time.

My biggest concern is because she's my dads gp. His last results he was told were normal even though he'd said he still had symptoms. I told him to get a printout which he did tsh 5.4 (0.?-5.5). So he went back asking for an increase and she said yea you could just as easily go to 5.6/5.7 as you could drop to 5.2/5.3 so we can trial an increase... she then gave him another 12.5mg which seems low to me? He was at 5.4 on 100mg.

He asked for t4 and t3 checked but was told the lab didn't do it.

So I'm slowly losing faith that my t4 trial will be any more than 12.5mg and will be stopped or reduced as soon as its back in range and I'll be told I'm normal :(

Do you think I should just wait and see or give up on the nhs and start getting myself sorted?

28 Replies

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  • Your TSH and FT4 are very close to where mine were when I was diagnosed. (Mainly thanks to a very clear picture of rising TSH over many months.)

    Clearly a GP who does not understand.

    You would do well to have a read of some fairly recent posts by diogenes - he is a TUK adviser and inventer of an FT4 test. His profile is here:

    healthunlocked.com/user/dio...

    Allowing someone on FT4 treatment to have their TSH meander around the top of the range is, in my humble and unqualified opinion, malpractice.

  • Thanks I'll have a read now.

    Yea that's what concerns me. My last gp didn't want to know, so I was feeling really positive when I changed and there was a possibility of a levo trial in future with the new one (and b12 injections which seem alot of people with lower results than mine struggle to get.)

    But now I know how my dads been managed I'm not so optimistic and wondering whether to just go it alone :-/

  • Although many, many people here self-medicate with desiccated thyroid and/or liothyronine (T3), relatively few don't have some sort of diagnosis.

    I feel that, if possible, it is preferable to have been launched on treatment by a doctor. At the same time, it is not at all good to remain hypothyroid and without any treatment.

    Guess that means - try to do what you can to get started, then (if needed) take a bit more charge. See a different doctor? Purposely make an appoitnment when she isn't available?

  • Thanks, there's only one other Dr. The one I saw owns the practice. But I guess it's worth trying.

    Maybe I'm just getting impatient, sorry. I just want to feel myself again. I haven't done for years :(

  • Completely understand that. It can be very difficult. Why should you have to continue without treatment?

    I am at a large surgery where the chances of seeing the same doctor twice are minimal! (At least, much lower.)

    Is there any possibility of changing surgery? Or even, as a one-off, having a private appointment with another doctor?

  • I'd be happy to see a private Dr if I knew where or who to go to that I wouldn't get the same response.

    I have only just changed gp and only seen her once. My last gp told me my results were clinically insignificant.

    My only issue with changing again is if I get someone like the last one again and the b12 and folate supplements being stopped.

    I'm not having much luck with gps x

  • Perhaps contact Louise at Thyroid UK and ask for a doctor's list? I know it is mostly endocrinologists but there might be some others on it.

    louise.roberts@thyroiduk.org.uk

    Perhaps put up a new post expressly asking for a thyroid-aware doctor who does private appointments in your neck of the woods?

    (Do ask for replies by Private Message - we don't like to identify doctors by name in public.)

  • melissaemily,

    My immediate reactions, in no particular order are

    1) No, do not start self treating with thyroid medication. If you do that, you will never get a diagnosis of hypothyroidism because blood tests will always show you as being in range, so doctor will not be able to diagnose or prescribe. Hence you will be potentially condemning yourself to a lifetime of self treatment.

    2) Change your GP, for the sake of yourself and your father. This GP is obviously completely ignorant about thyroid conditions and would rather keep you both ill than bother to educate herself on this.

    3) If you can't change your GP, then you'll have to gather together some relevant published papers on the treatment of hypothyroidism and be prepared to argue your point and educate your doctor.

    4) You may not be feeling the full benefit of your B12 injections because you're still hypothyroid. Being hypothyroid can mean that your body is less able to utilise the B12 properly.

  • Thanks helvella and redapple.

    Where you say I haven't got a diagnosis, she did agree I have autoimmune thyroid which will most likely develop to full hypo.

    Does diagnosis basically mean treatment? Or diagnosis of full hypo?

    The wait is the worst! I've been feeling crap for so long and have such obvious symptoms I don't know how I'm still borderline! X

  • This idea that a doctor can diagnose autoimmune thyroid disease, but not prescribe treatment when you are borderline, is in my opinion, utter nonsense. It's obvious you need the medication, so waiting until you are on deaths door is, as Helvella says, a form of malpractice.

    Nevertheless, if you start self treating now, before you've been prescribed anything at all, you will be in a catch 22 situation of never getting anything prescribed.

  • That makes sense. Thanks, I guess I'll just have to keep waiting.

    It's such a crappy situation to be in I feel like I'm missing out on my life whilst I play the waiting game x

  • I completely understand. Especially as it's not impossible that your TSH will take a long time yet to rise sufficiently high enough to appease this GP.

    Perhaps you could have this sort of discussion with your GP... Ask her outright to prescribe, and when she says no, tell her you are going to self treat and would she please at least monitor you with the necessary blood test every four weeks while you titrate your dose. You could also put this in writing, and ensure that it is in your records.

  • Thanks. Hopefully she'll agree to start the trial next time I see her. I'm just worried the dose won't be high enough to do anything.

    I told her I was planning pregnancy to make her more willing to give it me.

    I do my own blood tests anyway through bh as the gp will only test tsh x

  • The point about asking her to monitor you with tests if you self treat, is that it's forcing her to take some responsibility, and just might push her into prescribing as well.

    With regards to the trial dose possibly not being high enough... one step at a time! Get that prescription and start the medication. Then deal with whatever comes next :)

  • Thank you. I'll try my best.

    Only 2 weeks and counting till I go back! x

  • Have two letters in your bag. Mark one, so you know which to give her, with A for agreed that she has agreed to monitor your self medication and would like the letter on record or NA not agreed asking the practise to reconsider monitoring your self medication. The letter NA, if needed, just might sway her decision when it's in her hand. Then you can swap it for the other one! Good luck.

  • That's a good idea thank you :)

  • As you have Hashimoto's then you may find adopting 100% gluten free diet can really help reduce symptoms, and may lower antibodies slowly over time too.

    You could start this while you wait - it won't lower antibodies very quickly especially while you have high TSH and not on any thyroxine. But it may help improve your gut, leading to better absorption of nutrients

    Selenium supplements can help improve conversion of T4 to T3 and may also lower antibodies

    Magnesium supplements also recommended when taking vitamin D. Also vitamin K2, because supplementing D increases calcium levels in blood and K2 helps that calcium go into bones rather than muscle.

    Don't expect your GP to be aware of how to treat the root cause - autoimmune issues usually/almost always gut related, especially Hashimoto's. Gluten intolerance is most common, sometimes dairy, or can be gut infections / bacteria due in part to low stomach acid - e.g. H Pylori

    chriskresser.com/the-gluten...

    thyroidpharmacist.com

    hypothyroidmom.com/92-of-ha...

    news-medical.net/news/20110...

    Link About gut infections

    hypothyroidmom.com/hashimot...

  • Thank you, I have started to cut gluten out but haven't noticed a difference. I never noticed a difference in how I felt with what I'd eaten. But like you said it will take a while so I'll keep going :)

  • Gluten-free has to be total in order to have any chance of having a positive effect. Partially gluten-free is probably going to have no noticeable impact.

  • I'm trying but it's hard haha!

    But I was going off reading that it's a bad idea to stop suddenly and should be phased out so your body can adjust? X

  • I'm no expert, but that sounds like rubbish to me. Your body does not need to adjust to gluten free. If you were to go totally sugar free, or even just very low carb, then slowly does it makes a lot of sense. But not simple gluten free. :)

  • To be fair my main issue was bread which I've stopped. Pasta switched to gluten free. I don't eat crackers or biscuits or anything like that.

    It's just the stuff you don't realise it's in like soy sauce but that's only been occasional and I was stupidly drinking Robinson's fruit and barley without even considering gluten would be in squash. Even though it's in the bloody name! Can I blame brain fog? :)

  • I would be more concerned about the sugar level in the squash than any minuscule amount of gluten. (Only coeliacs need to be concerned to this degree in my understanding) :)

  • Oh that's good :) yea I don't have it all the time. Just when I fancy something with more flavour than water. I either have squash or fruit juice which I know both have alot of sugar. But it's only occasional and I don't drink anything else like fizzy drinks tea or coffee etc mostly water. I can just find it quite boring. Any other suggestions welcome :) x

  • Life would not be worth living without my morning coffee and afternoon tea (no sugar in either). Oh and my glass of red wine at the weekends. But each to their own :D

  • Haha what I lack from tea coffee and alcohol I unfortunately seek from chocolate 😂 we have to have something to keep us going x

  • I never had any signs of food intolerance or gut issues, but going strictly gluten free has been a fantastic improvement. Pity I didn't do it over 20 years ago.

    It was only through reading on this fantastic forum that the gut is often the cause. I would never have considered it. Certainly was never suggested by any medic.

    Which comes first the Hashimoto's or the gut issues? Probably the gut. Many different reasons or causes such as food intolerances, toxins, low stomach acid, low vitamin D, gut infections, genetic predisposition, the pill, HRT, stress or a combination of several.

    Apparently once we have "leaky gut", the gut lining develops holes that allow larger particles, especially gluten, to cross from the gut into the blood stream. There is a part of gluten called glandin that is very similar in structure to thyroid hormones. Your body recognises the glandin in the blood as foreign and attacks it. But in the process also incorrectly attacks the thyroid as the same (called molecular mimicry) and this results in high thyroid antibodies - Hashimoto's.

    Yes, It is tough to go gluten free to start with. But once you work out what you can eat and adapt recipes, buy gluten free flours etc it gets easier. Eating out at friends and family can be tricky, especially if they think it just a "fad".

    Eating at restaurants etc is definitely getting easier here in UK, though best to check the menu or ring ahead. Some are really good. I found Cote Brasserie and Leon brilliant

    I have just had my first foreign holiday since going gluten free. It was a bit of a challenge, but on the plus side not being able to eat all those calorie laden puddings, meant I didn't put on any weight! The winter sunshine was great for improving low vitamin D.

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