Help please .. I'm going mad !

Hi everyone

I've been hypothyroid for over 20 years now .. and being quiet nieve I just took docs advice and my levothyroxine had benn going up and up .. I'm currently on 200mg a day as my TSH levels gone up to 20.

I constantly battle with fatigue. Headaches achy joints. Etc.

But lately feel I just can't cope any longer. Docs pit me on antidepressants 3 years ago since I lost my brother through ms.

I feel I can't cope with daily life and am now on reduced hours in work as I. Any do s full day !

I used to be a healthy active person. Running going to the gym but I've not done that for years.i have elderly parents to look after and can't even cope with looking after myself !

I did some research online and found I maybe experiencing problems from the levothyroxine I'm taking !!!!

I finally paid to go see an endocrinologist last month privately as I was tearing my hair out.

I wanted to come off levo abd try something more natural. However I've seen him twice now and he insists I stay on the drugs and says come back in two months !

Please can anyone give me any advice. Had anyone else experienced the problem of .. no one is listening to them ?

I have cronic brain fog and can't think straight. What has to happen before someone listens ?

I live on my own .. some days I don't feel safe to even drive !

Please help !


Wirral merseyside !

37 Replies

  • Welcome to our forum Marie. You are another who has joined because you have been unwell for 20 years due to the 'modern' method of treating/diagnosing people with a dysfunction of their thyroid gland.

    You are in the right place and lots of members will come to your aid and will try to help as best as possible.

    First most doctors are completely incapable of treating patients by their symptoms and only look at the blood test. So I am shocked that the Endocrinologist didn't do so with a TSH of 20 whilst taking levothyroxine. Probably he doesn't have an inclinging in the first place and wants some space to think about how to treat you, in the meanwhile you are left in limbo.

    If you are on 200mcg of levo and have a TSH of 20 and you have had a useless appointment with an Endocrinologist who has refused to analyse why you have such a high TSH whilst taking a decent dose of levo. It leaves me speechless.

    I would suggest to your GP that he first of all does a Full Thyroid Function Test which includes T4, T3, Free T4 and Free T3 tested. FT4 and FT3 should be towards the upper part of the range. If FT3 is low you may not be converting levothyroxine properly to T3 (it is the only active hormone our receptor cells rely on to keep us well). Levothyroxine is T4 and it is inactive and should convert to sufficient T3.

    It is a big learning curve if we've to get well so I will give you some pointers:-

    Blood tests for thyroid hormones should be the very earliest possible, fasting (you can drink water). Allow 24 hours gap between your last dose of levo and the test and take it afterwards.

    If you've not recently had B12, Vit D, iron, ferritin and folate tested ask for these as we are usually deficient which can also cause symptoms.

    If you can afford tests we have recommended labs that will do the whole lot as NHS labs might not.

    Always get a print-out from the surgery of your results, with the ranges (labs differ and it makes it easier to comment).

  • Aw thank you SO SO MUCH for your kind reply. So I'm not going mad then !!!

    I felt like I was ranting .. maybe I wasn't clear. Sorry just to clarify the endo did do full bloods I will post you my results below. Plus I am getting B12 injections every 10 weeks as I've got pernicious anemia.

    I don't think I've been tested for the others you've mentioned. But ... due to my recent bloods the endo has increased my levo from 150 mg. to 200 mg.

    here are my last results done a month ago.

    TSH - 20.7

    FREE T4 - 13.8

    FREE T3 - 3.1

    I don't really understand the results but if you could give any advice I would REALLY appreciate it

    Thank you

  • It is helpful if you put the ranges - the reason being that labs differ throughout the country (just to complicate things) but it would seem to me that your FT3 is at the bottom of the range.

    How long have you been taking 200mcg - if it is just recently get a new blood test at 6 weeks. This will give a more complete picture.

    Make an appointment now for the earliest and follow procedure above to get the best results and also ask GP to do the 'extras'. :)

  • Sporty-mi,

    Get into the habit of asking for results with lab ref ranges (the figures in brackets after results) after every blood test to monitor your levels.

    TSH is 20.7 is very high so you were very under medicated on 150mcg. Most people will feel well when TSH is 1.0 or lower with FT4 in the upper range and FT3 in, or near, the top third of range. TSH is currently high because FT4 and FT3 are low.

    For maximum absorption Levothyroxine should be taken with water 1 hour before or 2 hours after food and drink, 2 hours away from other medication and supplements, and 4 hours away from calcium, iron, vitamin D supplements and oestrogen.

    It takes 7-10 days for the Levothyroxine dose increase to be absorbed before it starts working and it will take up to six weeks to feel the full impact of the dose. Symptoms may lag behind good biochemistry by several months.

    You should have a follow up thyroid test 6-8 weeks after starting Levothyroxine. Arrange an early morning and fasting (water only) blood draw when TSH is highest, and take Levothyroxine after your blood draw.


    I am not a medical professional and this information is not intended to be a substitute for medical advice from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • I've been on 200 since 1st November

    Ok .. here's the full test with the numbers on the right

    TSH - 20.7. Range 0.30-5.50

    FREE T 4 - 13.8. Range 11.50-22.70

    FREE T 3 - 3.1 Range 0.00-7.00

    Does that help ?

  • Hi, sporty-mi, welcome to the forum.

    To have a TSH of over 20, on 150 mcg levo, says to me that you have an absorption problem. Ah, and by the way, that was a hefty increase! One should only increase by 25 mcg at a time, otherwise, you can over-stress the body.

    Do you take your levo (thyroid hormone replacement, not a drug) on an empty stomach, one hour away from food or any sort of drink except water? Also, two hours away from any other medication and supplements? And four hours away from iron, magnesium, calcium or estrogen (should you be taking any of those)?

    Do you have Coeliac disease? Or any kind of digestion problem? Are you taking any other medication? Do you eat any form of unfermented soy? Do you have stomach acid problems?

    I don't think it's the levo that isn't agreeing with you, you just don't seem to be absorbing it very well. So, that would probably be the same with any other form of thyroid hormone replacement. And you seem to be converting ok, you just don't have enough to convert. So taking T3 probably wouldn't make any difference. Although we do have to try these things to know, but we should try getting the levo right first, before moving on to anything else.

    As for something 'more natural', I presume you mean NDT - Armour and the like. Well, they're not as 'natural' as people make out. The basic ingredient is pig thyroid, true, but there have to be fillers added to make it into a pill. And NDT does not agree with everyone, by any means.

    Also, you have Pernicious Anemia, and low B12 symptoms are very similar to hypo symptoms. So, I'm wondering if 10 weekly injections are enough for you. Maybe, you need more. Are you taking a B complex daily, to keep the Bs balanced? They all work together, you see.

    How about your vit D and ferritin? Have you had those tested? If they are also low - which they will be, if you have an absorption problem - they will cause symptoms, too. :)

  • Grey goose thank you for your reply . It's so good to chat to people that understand. I used to take my thyroid tabs in the morning with other vits but have been taking this new does at night with water. And then my vit D and other vits in the morning. And still feel lousy.

    I have heard people swap to nature thyroid and have felt great ?

  • When you take your Levo/T4 at night - are you sure it is two hours AFTER eating ?

    Do you have Thyroid anti-bodies ?

  • YES Marz I make sure I eat 2hrs before.

    How do I know if I've got thyroid antibodies ? 😱

  • You have them tested. Anti-TPO and Anti'Tg. As you know PA is auto-immune and they can often come together. It is known as Hashimotos and is the most common cause of Hypothyroidism. I am surprised your GP has not made the connection.

    I was sad to read about your brother - did he also have PA ?

  • Thank you for your lovely reply. No my brother sadly died of MS. he was only 46. 😢

    No my gp hadn't mentioned anything about it. My endocrinologist ordered the blood tests but I don't think I've had an antibodies test. I can't see it in my copy of the results.

    I'm thinking I maybe should ask for this to be done too. But you trust your consultant to do the necessary tests surely ?

  • They are rarely tested in the UK as they think treatment is just the same. This is true to a point but there is so much you can do to heal auto-immunity by healing the gut.

    Are you on the PA forum too ? Lots of excellent people there. Many of us here are also there 😊

    Have you read the book - Could it Be B12 ? - by Sally Pacholok. It is an excellent read - every home should have a copy. Also the books by Martyn Hooper who is Chairman of PAS and sufferer.

    Am afraid most Endos are better versed in diabetes. We have to read and learn for ourselves.

    I live in Crete so things are different/better here.

    I am not a medic. You can click onto my name and have a quick read of my journey ☺

  • Thank you Marz for your lovely message. Wow you have certainly been on a journey.

    I have joined the pa forum and some interesting reading on there also. Wish I had known this before and insisted my brother had been tested😢

    We all need to share our stories as we rely so much on doctors and think they know best.

    My symptoms are similar to lack of b12 and thyroid. I suppose just have to be patient. It's hard when I live alone and need to get things done for mum n dad and myself. Just daily life is so hard at the moment. I'm normally such a strong person. I've had to be. But feel so weak and pathetic like this.

    Thanks for all your kind words. I shall read up more tomorrow. I feel exhausted for now. Take care x

  • OK, so you've only been taking it on its own for a month. That's not long enough to feel a difference. You'd have to wait at least six weeks - probably longer. But, taking it with the vits could have been the reason for the lack of absorption.

    Now that you're taking it on it's own, be sure to get a test after six weeks, because better absorption could mean you become over-medicated.

    Yes, I've heard of people that swap to Nature Throid and feel great. But, I've also heard of people that are great on levo. I've also heard of people that swap to NT and feel much, much worse! Myself included! We're all different, and we have to find what works for us.

    However, the easiest and most convenient thing to take is levo, for various reasons. So, you should at least give that a chance before thinking of changing. You've been taking it wrong. Let's see how you get on with it, now you're taking it correctly. But, patience is the key! :)

  • Thank you grey goose .. sorry to hear Nt didn't agree with you. I do hope your feeling better now.

  • I take T3 only now, and I'm much better, thank you. :)

  • Ah bless you. I'm glad your feeling better. My endocrinologist won't put me on anything else here in the uk other than levothyroxine 😢

  • I know. They've got no imagination! lol I don't live in the UK, but I still self-treat, because doctors won't prescribe the amount I need to take, and I'm so sick of arguing! I just do my own thing. :)

  • Aw poor you. I may have to self medicate myself at this rate !

  • It comes to a lot of us, in the end! :( But, you're never as well served as when you serve yourself! lol

  • welcome to your new family forum sporty mi ..... firstly you are NOT going mad , I was directed to this site by a very good friend when my lady was extremely hyper [ tsh was 129.8 alone ] and the advice [ which can always be quantified ] , help , understanding and empathy has and still is superb ........ her thyroid problem [ that will be with her for life ] is now under reasonable control by management from us ,our gp and the endo/hosp , via regular blood tests and adjustments when ness of the med 'cocktail ' ..... the main thing we all need is communication from endo/hosp gp AND ourselves and all to be ''singing from the same songsheet '' ---- it can and does work ,,, but that's the hardest thing to achieve !!!!

  • Thank you .. so there is hope .. I suppose I'm just a bit impatient as i feel I'm just existing and not living life at the mo. And have been like this for ages. It helps to hear of others.

    Thank you

  • yes there is hope , and my lady is living proof -- she has had some odd ''blips'' here and there , but, it is now under OUR control .... as I said you need to find a good sympathetic endo [ that either knows what he/she is talking about , or 1 that ia willing to learn -- the same with a g.p. ] as well as a good g.p. and communicate between the 3 of you to control it fully ...... lastly this is something that there is no quick fix for so try not to be impatient when you achieve the proper communication people , it will take time -- but not as much as some people have had to endure

  • FREE T 3 - 3.1 Range 0.00-7.00

    If anyone ever really had a Free T3 of zero they would be a corpse. The reference range you've been given is absurd!

  • HB,

    It's not the first time I've seen that range. I agree it is absurd.

  • That's the range on my copy of blood results .. what is it supposed to be to feel better then

    Any ideas ?

  • Sporty-mi,

    The range is what the range is. More usually we see ranges like 3.1-6.8, 3.5-7.0 or 3.2-6.2. Most people will feel well with FT3 in or near the upper third of range which would be 4.62-7.00 in your range.

  • I think that's why they don't bother taking the Free's because they pay no attention to them nor the symptoms - as we know full well.

  • Hi Marie. As it could take some time to sort matters out, have you considered seeing an NHS endo at Arrowe Park? Surely there is someone there who could give a second opinion?

  • Hi beh1 thank you for your reply. You must be local to me to know of arrowe park ?

    To be honest. About a month ago I was at the end of my tether as I felt really bad .. I paid to see a private endocrine logist at Murrayfield .. prof Bowen jones. Who literally hasn't done anything different the gp has done .. and I paid £175 for first appt and £80 for the second appt.

    I can't afford it but I'm willing to go into debt and pay ANY amount just to feel normal again. !

    Do you have any recommendations on which consultants will listen. He seems to just nod and keep increasing the levothyroxine all the time 😥

  • Sporty-mi,

    Levothyroxine should be increased until TSH is around 1.0 with FT4 in the upper range. Increases are usually in 25mcg increments every 6-8 weeks but when TSH is high as yours 50mcg dose increases are appropriate.

  • I think that consultant also works at Arrowe on the NHS, so you could save yourself money by seeing him there. Also any blood tests would be done there too. I think he is very senior there so unlikely anyone else would offer a different opinion. However, he may be able to offer liothyronine eventually -again hopefully on the NHS. I've been told ndt is a no no on the Wirral nhs, so if you went down that route eventually you'd have to self medicate-a very last resort, but a good book is 'stop the thyroid madness'. Good luck.

  • Thank you for your lovely reply .. I'm new to all this. If I eventually had to self medicate. Have you any idea if costs etc.

    Any advice would be greatly appreciated. Of course I will see what he has to offer first.

  • kittenmittens was in a similar position to you and self medicated t3 - might be worth a private message to her to ask for supplier. She eventually found an endo to prescribe it but didn't like the uk brand. I am disappointed that prof let you down.

  • Thank you .. your all so lovely and supportive .. your kindness means a lot.

  • Thanks for your reply .

    I cocked on the link I don't think it's working !

  • It worked for me.

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