Levothyroxine

I have been on Levothyroxine for around 10yrs and am not well on it. I think that I should be on the natural version but Dr and Consultant don't want to know. My last reading was Serum free T4 level 10.1pmol/L and Serum TSH level 9.05 mu/L. Thyroid peroxidase antibody level 772 kiu/L (0-35) consistent with autoimmune thyroid disease done 24.4.2015 due to be retested. I live in Cheshire and need help finding a GP who will listen, I cannot afford private treatment long term. Forgive me if this post is not allowed I am just about holding myself together, my daughter usually helps me, otherwise it's back on the anti depressants and awful side effects to help cope. I am feeling desperate.

23 Replies

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  • Why on earth is your tsh so high? Do they have an explanation for why they're keeping you undermedicated? That is just short of the tsh level where they start treating you for hypothyroidism! Ideally you need to be on enough levo for long enough to see if it will help you feel better, then if you still feel unwell there are other things to try, but life will be easier on levo if it suits you.

    Would be good if you could post all your thyroid results here along w ranges so we can see where you are. Do they test your t3? What dose of levo are you taking?

    God, with a tsh like that I'd feel like I was dying. Poor you!!

  • Serum free T4 level 10.1 pmol/L (9.0 - 23.0) Serum TSH level 9.05 mu/L (0.20 - 4.50) In 2014 Dec T3 was 1.3 (1.1 - 2.6) I am on 75mcg of Levothyroxine they put up to 100mcg and I was going nuts, could not tolerate it so they had to lower it back down. The consultant suggested 75mcg one day then 100mcg the next to alternate. I DON'T THINK THE STUFF SUITS ME AT ALL. I'm in despair, just taken my morning dose and know I'm going to start struggling again.

  • It doesnt sound like it suits you. Its probably not the levothyroxine, but the fillers in the tablets. There are three different brands in the uk.... Go and talk to your chemist and make sure you try each one seperately. It may help to take an antihistamine alongside the thyroxine.

    You are undermedicated and if you cant find a thyroid tablet to suit, then your doctor may be able to find a liquid hypoallergenic thyroxine, or he could try you on dessicated thyroid. Made from pigs.

    The brand you would need is probably the hypoallergenic Nature throid. He is allowed to prescribe this, though as he has to take responsibility himself, he will most likely do anything to avoid prescribing. There is more info on the website attached to this forum... thyroiduk.org.uk

    You can import it for yourself and try to get a doc to monitor you... Plenty of us do..... Cost for a couple of grains a day. (60 mg tablets) would be in the region of. £200 per year, inclusive of import costs, depending where you buy them from. However, self medicating isnt for thr faint hearted, you have to be aware of what you are doing, and taking twice as much as you need, never makes you feel twice as good.

    If you need sources, then ask on here and people can private message you. However, Have a go at trying the different levothyroxine brands first, and try the anti histamine too. You are taking tgem with water, on an emoty stomach, at least an hour away from food? I find last thing at night the best.

    Hope this gives you a starting point.

    Xx. g

  • That TSH is way too high! Have you tried a different GP? Could you get a referral to an endocrinologist? You need to insist that more is done, they can't leave you struggling like that!! x

  • I have tried seeing a private endocrinologist won't prescribe natural hormone. I want to try Natural hormone but GP won't prescribe it. They upped 75mcg to 100mcg and I couldn't cope on the high dose had to go back down to 75mcg. I'm surviving not living.

  • Helvella on this forum did some research a couple of years sgo on the nhs website. Using their infirmation he managed to produce a list of which surgeries in the uk had prescribed t3 or ndt. Worth you having a look to see if there is a more sympathetic doctor in your area. I have attempted to produce another list, but have failed miserably..... We really would like Helvella to produce another if he can....please.... But in the meantime, here is the link to the one he made earlier......

    healthunlocked.com/thyroidu...

    Xx G

  • Hi Gal, very interesting as it appears my surgery is also on the list and has prescribed T3 when I was wondering whether it might help me. Can you tell me how to read the the columns K, L, M, N. Not understanding what the quantities mean for starters. Does that relate to the amount of patients receiving T3

  • Sorry this is all new to me. Learning as I go along with help from family. Bit overwhelmed with info and how I'm feeling. J x

  • If you go the first Page, all the columns have headings.

    K. =. Items

    L =. Quantity. (As in no of tablets)

    M =. ADQ usage. ( avereage daily quantity?)

    N = NIC. (. No idea)

    O = Price. (Its in £ with too many decimal points )

    Stuff in brackets are my interpretations....

    G x

  • what is average daily quantity - does it mean the amount of meds handed out or amount of patients?

  • I imagine its the average amount a patient takes in a day, but its a guess..... Helvella put the chart together, he probably knows what it means.

    G X

  • well at least I know my surgery has been prescribing T3 if I want to try it at any stage and my GP says no

  • So, looking at t3, some times people have been given 28 tablets and the adq is 28. And ither times the adq is 14... So the adq seems to be the no of days the prescription quantity will last depending on how many are prescribed per day? All guesswork i'm afraid.....

    G x

  • See the link from my latest post!

  • Your post is allowed - you aren't breaking any rules and we can all read between the lines.

    The most blatant fact is that you are taking levothyroxine but are seriously undermedicated. Your doctor and whoever else you are seeing are hopeless and ignorant. No other word for it.

    The reason, and I am not medically qualified, is that it's due to your low dose of levothyroxine and your doctor most probably happy to keep your levels 'in range' (i.e. I'm assuming he thinks anything up to 10 is fine) your T3 will be so low that you cannot function.

    They are very willing to hand out the anti-d's due to symptoms but are completely unknowledgeable about hypo clinical symptoms.

    You have no option but to help yourself.

    Levothyroxine (in an opimum amount) converts to T3 - the only active hormone - and we need a sufficient amount of levo to convert to T3. We have billions of receptor cells in our bodies, the brain contains the most cells that's why our symptoms are/can be similar to depression.

    I bet your body temp is low as well as your pulse. Both have to be at a 'normal level' which happens as our levo or other thyroid hormones are increased to optimum.

    Our TSH should be around 1 or lower once we are diagnosed and on hormones.

    I think if some T3 is added to your levothyroxine you will find a great benefit, first because T3 doesn't need to be converted and will increase your metabolism.

    If after a trial of the combined T3/T4 taking pulse/temp before you begin so you have a guide, and after you begin adding T3 taking both several times a day.

    You can only improve as a TSH of the max 10 after ten years is absolute neglect.

    You will get a Private Message from members who have info and as you know that cannot be posted on the open forum.

    Always get a print-out of your results with the ranges for your own records and you can post if necessary.

    If you can afford a private blood test I would get one and at least you will have definite proof how poor your ranges actually are.

    The earliest blood test possible is best (fast too) and allow 24 hours between your last dose and the blood test.

    thyroiduk.org.uk/tuk/testin...

  • Serum free T4 level 10.1 pmol/L (9.0 - 23.0) Serum TSH level 9.05 mu/L (0.20 - 4.50) In 2014 Dec T3 was 1.3 (1.1 - 2.6) I am on 75mcg of Levothyroxine they put up to 100mcg and I was going nuts, could not tolerate it so they had to lower it back down. The consultant suggested 75mcg one day then 100mcg the next to alternate. I DON'T THINK THE STUFF SUITS ME AT ALL. I'm in despair, just taken my morning dose and know I'm going to start struggling again. I want to try the natural hormone but cannot find a GP or Consultant who will prescribe it for me. What can I do. I can't really afford the doctors who do prescribe it down south, I live up north.

  • You might well be sensitive to levo. It didn't suit me. When I first added T3 it calmed my whole system down. Also you have hashimotos which means sometimes you have too many antibodies issued at one time. You have had a very rough time and it can change for the better.

    Don't worry you can improve slowly :)

  • What you can do now, as you particularly would like to try NDT, is put up a new post headed 'NDT Please" and ask for a Private Message to be sent to you with information as levothyroxine hasn't helped you.

  • The endocrinologist told me that if he gave me T3 it would make me even more wired and because it's in Armour that would not suit anyway, stop this nonsense & just take the tablets. I have just come off Cetirizine after living on the stuff and found it cleared pain in my neck, back and shoulder.I can't believe how daft I've been to take Cetirizine, pain killers and anti depressants for so long to keep on Thyroxine and the endo didn't think it was much of a problem.I've been sleep deprived for years & I believed doc when told it was just part of Fibromyalgia which lead to a nervous breakdown which I am still trying to recover from.I just feel traumatised by the past few years. :(

    I was also told that my body was storing too much iron but they did not know why? Consultant thought it might have been due to inflammation in the body.

  • The only way is up now if you are in charge of your own health. It might not be a quick 'fix' but we cannot continue on the same path which hasn't come to an end, i.e. good quality of life and medication not determined by the TSH alone. Also offering an addition or alternative on a trial basis if patient still complains.

    The most recent from the BTA (they seem so backward):-

    • There is insufficient evidence that combination therapy

    with L-T4 and L-T3 therapy is superior to L-T4 monotherapy

    (Table 5).

    • L-T4/L-T3 therapy may be considered as an ‘experimental

    approach’ in compliant L-T4-treated hypothyroid patients who

    have persistent complaints despite reference range serum TSH values, provided they have received adequate chronic disease support and associated autoimmune diseases have been ruled

    out (ETA) (Table 5–6). There is currently insufficient evidence

    to support the routine use of such a trial of L-T4 and L-T3 outside

    a ‘formal clinical trial or N of 1 trial’ (ATA) (Table 5)."

    The Endocrinologist told you 'Tall Stories' about T3 (as do many as they aren't the experts they like to think they are) particularly about T3 assisting many to recover whether by adding T3 to T4 or T3 only.

    The BTA guidelines also aren't in accord with many of the 40,000+ on this forum. nightmare for many who rely on Endocrinologist/doctors to be thoroughly knowledgeable at the very least, not to know less than the patient.

  • You are wildly hypothyroid and your gp and endo are downright negligent to leave you with such a high TSH and low free t4

    Your tsh should be 1.0 or below and free t4 and free t3 should both be balanced

    in upper quadrant of their ranges

    thyroid-s is pretty cheap natural thyroid which you could self treat with as very many do

  • the Problem with Thyroid S is that it needs an extra level of activity to break it down..... Its the same with Erfa and so it doesnT suit everyone. ( me for a start).... As a starter the best option is probably naturethroid. Its not the cheapest but i would have thought something know to be hypoallergenic would be a good start... Then at least people have a benchmark, so if they take other brands they can compare.

    Xx G

  • Hi helpme2, I'm so sorry you're in this predicament. But, let's see what we can do to help...

    So, you must have had your iron tested at some point, to know that it's high. Are they doing anything about that? Are you giving blood, or something, to keep it down?

    Have any other nutrients been tested, like vit D, vit B12 and folate? If not, ask for them to be tested. They all need to be optimal for your body to be able to use the hormone that you're giving it. Your problem could be something simple like deficient B12 or something. Which, itself, would give you a lot of symptoms.

    So, try and get those tested, and let us see the results. In the meantime, you could take 1000 mg vit C with your Levo, to help absorption. And vit C is good for so many other things, it can't hurt to take it. :)

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