Hi lovely folks, I’m so sorry if this post seems a bit pointless & I feel a bit of a pain as I posted the other day.
But I just really would be so grateful for some reassurance that I’ve not lost the plot!
I had my blood results after 6 weeks thyroxine increase on Friday
- my tsh has come down from 25 to 6.74, (0.27-4.2) my t4 has gone from 12.8 to 13.6 (12-22) the GP has said I should be feeling much better now, but I feel much worse 😔
I did point out that my t4 is barely in range (& last time I had my t3 checked myself it was also barely in range.)
She says it doesn’t make sense I’m feeling worse, but surely after being severely undermedicated for 6 months now I’m not going to feel better miraculously in 6 weeks????
She started to question my mental state, but I’m really ok apart from feeling anxious that I feel so unwell & weak/dizzy all the time 😔
I’ve had this illness for 15 years+ diagnosed for 10 & I think I’d forgotten just how poorly it can make you as I’ve had a period in between of relative functionality (until the last 2.5 years)
I’m constantly feeling like I’m so exhausted I’m going to fall down, my legs are weak, I’m dizzy & deathly pale.
I’m having to quit my job, I’m self employed so not a clue how I’m going to manage but currently can’t work. Praying the thyroxine kicks in soon as I can barely function & I’m scared of becoming completely housebound again like I was before diagnosis
Sorry for the rant, just feel so abandoned by the doctor and being made to feel like I’m going crazy/imagining how unwell I feel is so upsetting.
She said maybe I’ll just be “one of their medical mysteries” 😔 this made me feel awful as I just want to be well.
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MissOphelia
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Oh dear. Doctors have some very unrealistic expectations of thyroid hormone replacement. In fact, they don't have a clue! But it is she that is wrong, not you. With a TSH of 6.74, you are still very hypo. It should come down to 1 or under. And, people with a TSH of 2 can have a lot of symptoms and feel very ill. Doctors just don't understand that.
When did you have your FT3 tested? Did you have an FT4 and TSH at the same time? If so, can you give us the results and ranges, please? How about antibodies? And, how much levo are you taking now?
Don't let her Pollyanna vision of levo throw you. No hypo would expect you to be feeling better with those levels. And another thing she doesn't understand is that progress isn't linear - we have ups and downs, and good days and bad days, so it's not at all surprising that you're feeling worse rather than better. And, instead of questioning your sanity, she should be question her thyroid education - or lack of it. Chin up!
I’m getting so frightened now because I feel so poorly.
The last time I had my t3 done I got it done via medichecks the same week as my tsh in March this year when my tsh was 24.9 from the GPs test
(I couldn’t afford to get them all done via medichecks so I know it’s not exact in showing my conversions cause they weren’t done at the same time) my t3 then was 3.4
pmol/L
3.1 - 6.
The last time I had my antibodies checked was march 2018
Thyroglobulin Antibodies 842
kU/L < 115 R
Thyroid Peroxidase Antibodies
171 kIU/L < 34 R
I’m on 75mcg levo every day & she’s upped it to 1 day a week 100mcg.
It all started to go really wrong 6 months ago when I felt a bit overmedicated and they reduced my thyroxine back down to 50mcg, since then I’ve been struggling to get a correct dose as I really react to increases in levo so it’s been a complete nightmare.
I got my cbd oil today that you recommended me last week so have my fingers crossed for this. Thanks so much for your advice!xx
Oh, silly woman! That stupid little increase isn't going to do much!
You have Hashi's, so I doubt you were really over-medicated six months ago, you just had a Hashi's 'hyper' swing. But, can't be sure without seeing the numbers.
Are you strictly gluten free as this may help with your antibodies (Hashimotos).
I have Hashimotos and an underactive thyroid. I’ve been strictly gluten free since sept 2017.
You need an increase in Levothyroxine as a TSH of 6.4 is still not correct. The result of 6.4 was that when she then increased your Levothyroxine by 100mcg once a week?, did you ask her why only the increase once a week with that TSH result.
Is there another doctor you can see and ask for the increase everyday.
Sometimes we can mistake being overmedicated for under medicated.
You really need to test full thyroid panel, TSH, T3 & T4 if you can afford this can be done via Medi checks you can do this for £39.00 and it is a finger prick test.
I believe if you enter code TUK20 or THYROIDUK there is discount. I know the THYROIDUK is 10% off.
I haven’t gone gluten free yet, I know I should try it again as I did before for 3 months, although I didn’t feel benefit I think I may need to try it for longer.
Yes the latest result of 6.74 she said to just add the extra 25mcg a week, I think it’s cause I react so much to the thyroxine increases, but I thought the same that it didn’t seem very much
When my tsh was 25 she told me to take my 50’s & 75 every other day...I felt so undermedicated I just started taking 75mcg every day.
I’ve actually moved Drs today as I’ve moved area so will be seeing someone else, whether they’ll be any help is quite scary!
Good luck with new doctor and agree with the fact that you are still under medicated. The scale used for thyroid diagnosis is logarithmic so 6.74 is not just a little bit over the range but enough to make you still feel rough. I’m afraid there is no instant fix and it’s a bit of a long haul back to ‘normal’ when you’ve been under treated for a while. I’d say it took me three years in all to start feeling like my old self. surround yourself with friends and tell them how you really feel no matter how difficult. I wish I had but you worry people think you’re grumbling about nothing as they can't always see visual evidence. I found it easiest to say the thyroid affects every cell of your body from movement to thinking and temperature. All the best! (I found jigsaws good for getting through the long hours of waiting to get better)
No, you're really not losing grip. And it was very unkind of your doctor to suggest you were. But, it's always easier to blame the patient than do your job!
Doctors do not understand how Hashi's works, and it always comes as a complete shock to them to find that a patient is 'over-medicated' when they're still on the same dose! How is that possible? Well, that's how Hashi's works. When the immune system attacks the thyroid, the dying cells dump their stock of hormone into the blood, causing blood levels of FT4/3 to rise sharply. But, it is neither over-medication nor 'going hyper', but they just don't know that, as incredible as that may seem. So, they panic and slash the dose. Which is the wrong thing to do on two counts, the second being that you should never reduce a dose of levo by more than 25 mcg every six weeks.
So, then, when that excess hormone has all been used up or excreted, and the patient is now more hypo than she was before (because she now has less thyroid to make hormone) they are very reluctant to raise the dose again.
Don't expect instant results with the CBD. For one thing, it can't replace thyroid hormones. And, for another, it will take at least a week to feel any better. Start on 1 drop twice a day, two hours away from thyroid hormone, and increase by one drop every two or three days. The more you take, the slower you increase.
Just about to say your doc. was a silly woman, to find wise Greygoose had beaten me to it. Of course you don’t suddenly start dancing around ‘cured’ after 6 weeks treatment after so long hypo! Yes your blood results suggest you are getting better but still some way to go to get TSH of nearer 1 or below. I quit my job 15 years ago ( secondary teacher) as couldn’t cope with feeling so fatigued etc; unfortunately not uncommon. I suggest you get your ferritin, folate, b12 and vit D tested too as if below optimum( upper end of ranges) our thyroid health suffers, and we get symptoms ranging from aches, tiredness, hair falling out etc...if dr. won’t test all 4 consider private lab test ( eg Medichecks, Blue Horizon ) , and supplementing if necessary...it took me years to find out how necessary this was!
As everyone has said. Your GP is clueless. Mine did just the same - I still wasn’t even in the normal ranges and he said ‘you’re okay now, your TSH has come down.’ I sat in front of him looking and feeling like sh*t! I felt no better, couldn’t be bothered to brush my hair or iron my clothes any more, I looked like a tramp and felt like death warmed up - I couldn’t believe what he said! My reply was ‘private endo now!’ Luckily that has saved me, but not everyone has that option.
You WILL feel better, but your dose needs to be raised and fine tuned to find your ‘sweet spot’ then your old self will start to return. Levo is sometimes referred to as a ‘Goldilocks’ treatment - you have to have not too little, not too much, just enough and you know where that is when the symptoms subside. It’s almost like flicking the ‘on’ switch! Most GPs do not understand or cannot be bothered to fine tune patients’ dosage, but by having blood tests, monitoring how you feel and following the excellent advice of people on this forum, you will get there.
Read up on here and find out as much as you can. It really is the best forum to learn about your condition - then you can inform your GP and help yourself on the journey to restoring your health. It isn’t a quick fix, but you WILL get there. 🤸🏿♀️🥛
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