Hi. greygoose SlowDragon I’d be grateful of your thoughts on this response from the endocrinologist, after my NHS GP referred onward as she felt I should not be treated with levothyroxine citing making my bones brittle etc.
What am I best to do now? Private endocrinologist? Will they just take the same approach? I’ve been feeling truly awful for the last week, which may be linked to three or so weeks of taking supplements and so on (counterintuitive but possible I think)?
Advice from anyone would be welcomed but you have both been particularly helpful thus far.
Thanks again 🙂
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TheMudRunner
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I’m so sorry the NHS endo was unsupportive of a Levo trial.
You could look to see a private endo, who may prescribe a trial of Levothyroxine based on adverse symptoms, TSH over 2, & TS4 low in range. If you choose this option, have a look at the TUK list, and also post again asking for a recommendation in your area (admins will then close this to replies as per forum guidelines).
Did your GP address low vit D levels, as per your previous post?
Are you taking steps to optimise other key thyroid vitamins?
Have you considered a gluten free trial? Many with Hashimotos (myself included) find this beneficial
The NHS as a rule only, begins treatment when someone has had 2 TSH results above range 3 months apart.
Have you had any blood tests with TSH above range?
On the blood results you've posted here it does look as though your thyroid is struggling, but as all NHS GP's and Endo's work to the NICE guidelines you will need the requitement of 2 tests, 3 months apart on the NHS with TSH above range.
Suggest you keep going with the supplementing, retesting vitamins after 3 months to check you're taking enough of each supplement to take your lvels to OPTIMAL. This alone will help how you feel, your active B12 was on the low side inparticular.
Retesting thyroid levels every 12 months is a bit mean and I would have thought every 3-4 months would be better. Be sure to use the protocol here:
Test at 9am (or as close as possible), fasting, & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process).
Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day.
You could go privately to begin treatment but then the NHS are not likely to take over your prescription and may try and make you stop taking Levo in the future if they don't believe you need it.
So, this is the only recent blood test I’ve had (reposted for ease). I’ve not had one where TSH is out of range, but I am symptomatic (have been for 5 years and got a lot worse this last year), and my levels are all getting near to the boundaries of their ranges.
I am now taking vitamin D (spray with K2), and vitamin B12 alongside a vitamin B complex, and selenium. This is in a bid to get my levels back up, which I believe may raise my TSH levels further (?). My plan was to privately retest in another 6 weeks giving me 3 months between tests.
I am one week into trialing gluten free. I am feeling worse this week than for a long time (tiredness) but less brain foggy and with less itchy skin. Jury is still out but I’d say it’s not making things worse at this point so I’ll carry on for now. I appreciate there is lots of guidance to do a coeliac test first, which I haven’t done (sorry). I worked on the basis that either way I’d be not eating gluten and seeing a positive change 🫣
I have booked a private GP appointment for Monday. I’ve nothing to lose really bar a few pennies (so to speak). I would really like to have a firm grasp on how to approach the conversation with him before I go.
For completeness: These were from a pre-9am blood draw, and before I was taking the vitamins mentioned. I was taking a multivitamin but there was no biotin in that formula.
I wouldn’t hold out for a private GP to prescribe thyroid medication, as TSH is within range. In my opinion, only an enlightened endo will sanction a trial based on symptoms/ positive antibodies.
Definitely trial 100% GF for 2-3 months, plus your vitamin regime. As SlowDragon suggested, I would then retest thyroid levels, share with us and then ask for an endo recommendation if needed.
Sorry to say this was the response I expected from an endo. They don't really know anything about thyroid, they just follow the guidelines blindly. And they don't care about your symptoms because a) they don't know much about them, and b) as they're not specific they can always tell you they're 'nothing to do with your thyroid' and must be 'due to something else'. I could, actually, write their scripts for them!
So, all you can do is, as SlowDragon has suggested, work on your nutrient levels and keep on testing.
It’s all a bit grim, isn’t it? I’ve been feeling rotten this last week, with such low energy even by my standards. Not coming down with anything, but getting up and moving let alone trying to focus for work has been painful. It’s hard just to wait and hope that I manage to find someone who will treat me tbh. I have booked to see a private GP on Monday which will perhaps guide me to a plan of action. Right. Is it all feels a bit hopeless 😞
Yes, but you have Hashi's. So, bloods are going to get worse - TSH higher, Frees lower - until they have to take notice. That is scant consolation at the moment, I know, but things should work out in the end.
Let us know how you get on with the private GP. Fingers crossed!
Thank you greygoose . I’m feeling oddly emotional today which isn’t helpful..! It’ll pass. I realise being impatient is probably not good with this one, but after 5+ years to get this far I am running out of it, for now at least. I think the fact my GP also gave the endocrinologist the wrong information (she misquoted how long I’ve been on a low calorie diet with higher gym load as 6-7 weeks, rather than 14 weeks for 6-7 hours per week and the associated weight loss [3kg] which makes the weight loss seem much more reasonable than it is for effort assuming I don’t have Hashi’s so hardly helped..!). I am not being so diet focused now, as you’ve mentioned low fat / low calorie won’t be my friend at this point 🙂 but for that amount of effort (pain and exhaustion!) you’d have expected much greater loss if I was clinically ok.
I will report back after Mondays visit. Thanks so much 😀
Well, to be honest, I very much doubt the endo would know anything at all about weight-loss and how hypo affects it. That would be way above his head! Most of them won't even admit that being hypo make you gain weight. So, I doubt that what the GP did or didn't say about that had any effect on his decision not to treat.
How much patience are we supposed to have? I've been trying since 2015, every test shows a drop from the one before, my T4 is at 12 (12-22) my B12 has dropped steadily and is around 270 ( 145-569) my folate is low etc etc. Sadly all within range so no help available. I've just started week 4 of self medicating on 50 mcg of Levo. So far I've not felt any better and would say I feel worse, very fatigued, headaches, achy muscles etc. I shall persevere but when I have my next Wellbeing check up it will be interesting what they "find". Do let us know how it goes with your private GP, if it's positive he might find a big queue of like clients outside his door lol.
I’ve no idea! It’s bonkers. From what I’ve understood the Levi you take replaces your own, rather than topping it up so you may find you need more than 50mg. Then there are complications such as poor conversion of t4 to t3…
Out of interest, have you had your TPO antibody level checked?
Lots of times, I use Blue Horizon's gold thyroid tests, covers all relevant tests. Neither antibodies have ever been raised so I'm not thinking Hashis. I'll increase the Levo gradually as per forum wisdom.
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