It feels like I've gone backwards with my symptoms!

[Ladysmith53]

Diagnosed with hashi's last june and symptoms were really bad, last blood tests were in june and had heated discussion with doctor as she wouldn't increase. She then said she would have to consult an endocrinologist to see what their opinion was (haha!) Which I knew what the answer would be. These were ny results:

TSH 1.7 (0.4 - 5.5)

T4 18.3 (11.0 - 26.0) 49% through range

T3 3.8 (3.0 - 6.0) 27% through range

I waited weeks for a response and when the doctor got back to me it was as expected and she refused to increase. I was very curt and explained how the T3 was only 27% through the range and I know my own body and I cant live my life like this! I made a suggestion to increase by 25mcg a week ( I was currently alternating 100mcg/75mcg teva) Now I am taking 100mcg mon/tues/wed, then alternate 75/100. Start back again on the Monday with the 100mcg. So this is my 3rd week of the increase now. I have also 3 months ago changed tablet form HRT to a lower strength patch as was getting horrendous migraines every 2 weeks which lasted for 3 days.

My question is, why do my symptoms seem to be coming back with a vengeance, I feel like I did a year ago. Like I've been in the ring with Mike Tyson. I haven't felt like this with an increase before and I dont want to ring doctor as she will say its because of the increase!

I would be grateful for any advice, thank you in advance 😊

[tattybogle]

such a tiny increase was unlikely to help much. considering TSH was still so far above the lower end of ref range, and fT4/3 was still so low in range, it would have made more sense to increase to 100mcg every day. (not blaming you .. sounds like you did well to get anything at all)I wouldn't say anything to GP yet .. just put up with it till 6 weeks, then have blood test , then ask to be increased again (by a more sensible amount) It's very likely that TSH will still be well above the bottom of ref range on this dose.

The following is advice to NHS GP's ,from a specialist registrar in Endocrinology and a specialist registrar in Cardiology

gponline.com/endocrinology-...

"Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L."

The lower part of the TSH ref range is there for a reason .. ask your GP to use it.

If she won't ask for a clear explanation in writing why she wont allow you to increase dose.

[Ladysmith53 in reply to tattybogle]

Hi tattybogle thankyou for your advice. And yes initially I wanted to increase to 100 but she refused point blank to go against the endos 'professional ' advice! It was a battle to get the extra 25 and she then said if the TSH goes lower on the next blood test I would have to stop the extra 25. I argued with her that my TSH has been 0.99 before and couldn't reply. It's very stressful trying to get them to understand. I will suggest I email that information to her that you sent with the link... thank you 😊

[tattybogle in reply to Ladysmith53]

What !! she said if TSH goes lower than 1.7 she'd reduce again ....?That's ridiculous, and there's no evidence or guidance (anywhere) telling them to keep it above that level.

Ask her to justify this thinking about not allowing TSH to go lower than 1.7 .. she'll struggle , cos there's no scientific/research basis for it..... so ask for it in writing.

[Ladysmith53 in reply to tattybogle]

Yes she did... she is just basically going on endo advice because she hasn't a clue! That's when I said my TSH had been .99 a few months ago and she just couldn't reply anything to me and changed the subject, very frustrating 🤷‍♀️

[tattybogle in reply to Ladysmith53]

Well, she'll just have to go back to the Endo God to find an answer to you question in writing then won't she

He won't be able to find any scientific reason or guidance that say's you cant have TSH of 0.5 either..... 'cos there is non.

...... And of course your TSH will go down a bit on this dose.. what else does she expect to happen if you increase a dose of Levo ? ... she must know this is the most likely outcome, and is therefore just using it as a reason to do what she wanted to do.. which was 'not give you an increase an the first place'

Will somebody please save us from the tyranny of the Almighty but incompetent Endo Gods who think Levo treatment issues are beneath their dignity ? (if they can't be bothered to take enough of an interest in thyroid to understand the issues of treatment with Levo . then they shouldn't be involved in treating people with Levo)

I can live with GP's not knowing enough to do it on their own , but when they go looking for help ,they run into these all powerful endo's.. who frankly seem to know less than the GP did, but act like they know everything..... at least the GP (if left to their own devices) might have tried to think about it and read up on the issues.....

(Sorry... don't know why i'm so ranty today .... just had a spicy choritzo burger for elevense 's , and i'm normally a marmalade person ?? )

[Ladysmith53 in reply to tattybogle]

Hahaa, the spice obviously hit the spot, its good to have a rant anyway! Yes totally agree, it leaves many of us in limbo.. unless we self medicate!

[tattybogle in reply to tattybogle]

p.s 3 weeks is too soon to really know how the new dose will actually feel though . so do give it 6 weeks at least before you decide if it's an improvement or not. Some improvements come slowly , and the first few weeks are always a bit 'odd' anyway.

[Ladysmith53 in reply to tattybogle]

Yes I will do 👍

[Jubes]

I have hashes and my results are similar to yours, it’s always a fine balancing act and who knows if part of the fatigue is less oestrogen , I have been fine for years, but in last 6 months have had part of my prescription filled on TEVA. I’ve got bloating,low mood, weight started to change. So I asked for TEVA part to be changed, as it’s only since then I have had symptoms.

[Ladysmith53 in reply to Jubes]

Hi Jubes, hmm that's strange, are you on HRT too? How long have you been on the levo increase?

[Jubes in reply to Ladysmith53]

It wasn’t an increase I have been on 125mg years and very stable, then my generic 25mg was changed to TEVA by pharm from Accord. a recent study also shows that even a generic switch affects some people. So I asked for a refill of my 25mg with a different generic maker, and the bloating stopped.

[nellie237]

I'm not convinced that this GP spoke to an Endo at all. It makes no sense that she would admit to being so ignorant/incompetent to any Consultant.