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I suspected I had hasimotos after reading about it from Thyroid UK and the way I was feeling in October last year

I initially went to my NHS GP and was told my results were normal <--- incredible

I didn't accept this and decided to go to a private GP

my results were as follows, which kind of confirmed my theory (Paid for privately)

T4=102 nmol/L (59-154)

TSH=*5.95 mIU (0.27-4.2)

Free thyroxine=19.1 pmol/l (12.0-22.0).

Free T3=4.7 pmol/l (3.1-6.8)

Thyroglobulin Antibody=*140.1 IU/mL (0-115 Negative)

Thyroid Peroxidase Antibodies=*98.8 IU/mL 0-34

I started taking 25mg levothyroxine

and my next test looked promising (NHS)

TSH= 2.55 mu/L (0.3-5.6)

free T4=13.4 mu?L (6.3-14.0)

I still wasn't feeling 100% and was upped to 50mg of levothyroxine after a discussion with my private doctor.

It was at this point I took a letter from the private doctor explaining to me previous results and their recommendation, I took a copy of all this information to the NHS doctor, and he told me to only take 25mg levothyroxine.

I was really confused what to do but I continued to take 50mg levothyroxine

my next blood test results (NHS)

TSH= *28.8 HIGH mu/L (0.3-5.6)

free T4 (cant remember)

These results scared me and I didn't have a clue what they actually meant of how to interpret them, with no word from my NHS doctor and unable to make an appointment (as usual) I reduced my dose to alternate 25mg/50mg as I thought that was what caused the high TSH reading.

So I went private again to confirm high TSH and clarification (paid for privately)

TSH= *>100 mIU/L (0.27-4.2)

free T4= 12.1 pmol/l (12.0-22.0)

I was now told this is serious and she had never had results so high in 18 years of being a doctor, and advised to find a specialist and to take 100mg levothyroxine for the time being. Not only was I annoyed that such an apparently serious issue was being ignored by my NHS doctor and I had to pay for a private doctor to explain the results to me and advise me on what to do. Its such a roller coaster and I still feel no closer to feeling any better

this is really frustrating trying to sort this out I never have any energy, feeling tired, no libido, no get up and go, and running out of money tbh I cant afford a specialist my muscles in the morning feel like lead weights its hard to explain but the initial effort to move is ridiculous

Is there a hashimoto specialist out there who would like to experiment on me and help me? I think becoming a test subject to someone is the only way for me to get better.

Its nearly impossible to get an appointment at my local NHS doctor, I ring twice a day every day and even after the High TSH results (that I read can actually be life threatening) I didn't even get a phone call of concern or letter or explanation of my results or what I should do about them from the NHS. even if I did get an appointment he rules out or disagrees with the private doctors evaluation. this is why I went private but I can no longer afford to do this. and I hope someone out there can help or give advise.

Paul

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23 Replies

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  • You should not be in this situation its disgraceful but equally has your private doctor considered your ferritin and folate statusbecause unless ferritin is halfway up its reference range your body will havechorrendous problems converting t4 into t3

    really you need t3 in the interim or NDT

    i would be inclined to suggest you order NDT on the web and take that and i suspect things will improve

    your thyroid has obviously failed with a TSH as high at it is so the more complate a thyroid med you can take the better IMHO

  • I never heard of getting ferritin or folate tested? I don't know what they are? But also private tests cost upward of £50 each plus the consultation

  • You can arrange blood tests yourself and deal direct with the lab so no need for consultations. However, you shouldn't need to as the tsh is so elevated..... Details of tests on the left and side of the web site home page. thyroiduk.org.uk/tuk/index....

  • Your NHS GP should do it as a matter of routine its part of anemia

  • You are clearly hypothyroid as evidenced by a raised Thyroid Stimulating Hormone of more than 10 and you need replacement medication. Without the medication you could die. Its that simple. For this reason, when you are pronounced hypothyroid, all your Nhs meds become free.

    If .your Nhs ldoctor Knows about your raised tsh but is offering no medication or referral to an expert , then he is being negligent. You need to write a note to him which you copy to the practice manager requesting a referral as a matter of urgency.

    If you cannot get a .proper appointment, refer yourself to the local hospital a and e dept. its not ideal but you should be able to at least get some meds.

    You sound like you have an idea of how the thyroid system works, but maybe if you can head to a chemists in the morning, You can get a copy of the Antony Toft booklet... Understanding thyroid problems, which might fill in the gaps a little. its about A fiver.

    Here is a link to the bma version of how to deal with and diagnose thyroid problems.... With diagrams..... Make sure your doc sees it....

    bmj.com/content/337/bmj.a80...

    Good luck.....

  • Thanks for the reply.

  • This is shocking!!! Poor you. Have you had vitamin D and B12 checked? A deficiency in these can cause severe symptoms as i know myself.

  • Thanks for the reply, I have on occasion been taking supplements of these, but I have not had blood tests but thanks for replying

  • Paul,

    Priority is to see your GP via emergency appointment and get Levothyroxine raised to 100mcg with follow up test in 4 weeks which may indicate the need for a further increase. Ideally TSH will be just above/below 1 for you to feel well. My TSH decreased from 107.5 to 0.16 in 4 weeks on 100mcg. I didn't feel better for a few weeks after and was still experiencing flaking skin on my hands and legs 3 months later.

    Hashimoto's is treated in the same way as hypothyroidism but because the thyroid splutters in and out of usefulness when under attack by lymphocytes it can be trickier achieving an optimal dose of thyroxine and may require more frequent adjustments and blood tests to monitor levels.

    If you can't get an appointment you may need to consider changing GP or going to A&E as suggested above. If your GP isn't confident in treating you s/he should refer you to an endocrinologist.

  • Thanks for all the replies, it is quite overwhelming reading all people posts across the forum, of all the different opinions, views, ideas and treatments, Tests you should try. Seems Nothing concrete for such a serious condition.

    It does seem to basically differ for different people and it's just a matter of crossing of the list all the different tests/suggestions until you find something that works for you.

    How frustrating

  • I'd say bypass GP as he looks pretty useless and head straight for A&E. Probably need to tell them your thyroid is failing but you feel very very ill

  • Really shocking. I know it's hard to take in all these suggestions and can make you panic if your don't know enough about it. So the only advice I would urge you to take, if you haven't already, is go to A&E and explain that your GP is useless as is your practice by the sound of it!

    I do hope you're okay? Please let us know the outcome. Twitchy

  • It is fairly common to see people started on low doses get worse.

    You originally had a significantly raised TSH because your thyroid was not producing more thyroid hormone in response to the ordinary small variations in TSH.

    For reasons that are not easy to understand (which means, I am not sure that I properly understand or explain!) the output of the thyroid can drop when you start taking thyroid hormone - and by more than the amount you are taking. Resulting in a rapid rise in TSH and a fall in FT4.

    You need to be on a dose that is larger than the amount by which your own thyroid's output drops. So far as I am aware, this is impossible to calculate and seems poorly understood by medics.

    It looks like 50 micrograms is not sufficient. I hazard a guess that you might do a bit better on 75, much better on 100, and might, eventually, need more. However that is purely based on what we have seen in others and everyone is an individual.

    Your antibody levels are very strong supportive evidence that you have autoimmune thyroid disease/Hashimoto's.

    That complicates in some ways because of the roller coaster ride that can cause - with thyroid hormone levels rising and falling over, potentially, years. The basic approach is still to get your thyroid hormone levels into a sensible place.

    I suggest that you should have an ultrasound which can identify the state and size of your thyroid.

    I don't have any magic answers as to how to handle your GPs. I doubt I would use A&E, but I might use 111. I would ask the GP for an emergency appointment - a vet would be struck off for allowing an animal to remain untreated in the way that seems to be happening to you.

    Rod

  • Thanks for the reply, it is very calming.

  • I have plentiful of Levothyroxine, I have three packets of 50mg and half a packet of 25mg, is it ok to jump your dose like this? (From taking 25/50 alternate to 100), I was under the impression you should raise your dose gradually.

    Thanks for all the replies

    Paul

  • Hi Paul, it is indeed very frustrating! But the priority for you at the moment I think is to get your dose up to bring your TSH down. In theory, fit and healthy people, I.e. with no heart problems etc, could go straight onto a full dose, but yes I think it's better to build it up really, especially if you have possible ferritin, b12, folate issues. But going to 50 every day would be fine and then up to 100 if you don't feel any side effects. But really you need to be seen asap. As rod says, I don't think A&E is appropriate unless you are having difficulty breathing or chest pains. Good luck x

  • I feel your frustration and I am sorry you are having to go through all this.

    There is no problem with starting at 100mcg when your TSH is so high although some people prefer to start on 50mcg. Anything less is too low unless you have heart problems or are elderly.

    I agree with Harry and Rod that an increase is essential. You are currently on less than the usual starting dose. If you are uncomfortable increasing to 100mcg, try 75mcg for a few weeks first. It does take a few weeks to build up in your system so you may not notice improvements right away.

    If you do get side effects (unlikely but possible) it is most likely due to low iron or ferritin so it would be good to get these checked at some point.

    I hope you see some improvement soon!

    Carolyn x

  • Does any one know of any trials or anything along those lines in the UK, that I could sign up for? new medications to try, different trials with combinations etc, has anyone ever done this this?, do they even do this in the UK?

    It may help me on in the short term and will help others in the long term

  • One step at a time is my advice.

    Learning about the thyroid is difficult to start with. Symptoms can include confusion making it even more hard to absorb information and make decisions.

    Although the advice about checking vitamins and looking at different medications and tests is right, my thoughts are that you are not ready for this yet. I would start with the basics first.

    Something in your post struck a chord - you said your high TSH reading frightened you so you reduced your dose to alternate 25mcg/50mcg to bring it down.

    Reducing your dose was the opposite of what you needed to do. No wonder your TSH went even higher.

    If TSH is high it is a sign the body is struggling to produce more thyroid hormones. If the body gets more thyroid hormones, the TSH comes down. You needed an increase of medication. 25mcg or even 50 is also a very low dose anyway. No wonder you are struggling.

    I'm not medically trained but if I was in your shoes you need to work with a reasonable doctor to increase your medication while having regular blood tests.

    None of this can be hurried. You have to give the medication time to work and the improvements are often gradual. Chopping and changing doses without a good reason will just make the picture more confusing.

    Lots of people get well on thyroxine alone as long as the dose is correct and taken for long enough to make the difference. I would only recommend going down the route of looking at other thyroid medication if you are sure thyroxine is not working for you.

    Even before that I would look at making sure thyroxine has the best chance of working by making sure vitamins, minerals and diet is optimal. Again making sure that is given time to work.

    All of us so want to get better at the fastest pace but the sad thing is, dealing with thyroid illness just doesn't work like that.

    Get copies of your tests and keep a diary of symptoms to compare how you are feeling on certain doses and how this compares with the test results.

    If this doesn't work then is the time to look at alternatives.

  • Thanks for your reply!,

    Yes you are correct, my private doctor told me to take 50mg to start with, the NHS doctor told me to only take 25mg, I continued to take 50mg anyway and then after the first high result = that scared me, and I thought ooops I should of listened to the NHS doctor, and reduced to 25/50 alternate. Which I know now was wrong, today I took 75mg, and I picked up a 100mg prescription which I will phase in gradually. Or I think people are telling me it's safe to instantly move upto 100mg.

  • That's a difficult one to answer because people react so differently to changes in dose. Some notice changes relatively quickly. It also depends on the starting point. If you were very hypothyroid increasing the dose by too much in one go can make you 'speed up' and because you are so used to feeling sluggish it can just feel like you have taken too much. Whereas if it had been increased more slowly you may not have noticed and just slowly improved as your body gradually got used to the new and better feeling. Perhaps take 75 for a week and see how you feel and if ok you may be ready to increase again? Keep a diary and it will help you relate symptoms to the dose you are taking. It's all very individual so only you can tell but as you get slowly better it will be easier for you to judge what your body is telling you. Good luck and do stick with this site. It is amazing and helping so many people. It just takes a while to absorb the information and learn all about the thyroid.

  • Another question: is it normal to feel quite aggressive?, I'm quite aggressive/feel very short tempered/intolerant of people at the moment

  • Thanks lol, people seem a bit scared of me at the moment or I'm just got paranoia too

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