So, so tired and fed up with GP's

Hi everyone I am new to this forum. I am on 125 levothyroixine. Have been for many yrs. I was wondering if anyone has went from levothyroixine to dissicated thyroid hormone? I recently spoke to someone else who suggested NDT but another recommended T3. I am soooo tired of taking meds that are supposed to help with hypothyroidism and getting blood tests that say I am "within range" while stressing to the dr that it doesn't feel like it since I'm having all the same symptoms that I had when my thyroid packed in. I'm 49 an d they seem to blame everything I feel on the menopause. I need to change something I can't carry on like this. I'm now considering self medicating. My gp were only willing to test free t4, TSH, full blood count and b12. I am on vitamin D, folic acid, multi vitamin and calcium as I've had a gastric bypass. So I am looking for any help or advice please. I'm at my wits end and don't know the best way to go.

Free t4 was 21.5

TSH 0.48

Ferritin 16

B12 725

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15 Replies

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  • Your low iron is possibly the cause of your fatigue and needs treating. Do you have the ranges ?

  • Your ferritin is too low. It would help if you had posted the range. Can you edit your post and put the test results from your full blood count on your post WITH the ranges. This is so we can see if you have or are borderline iron deficiency anaemic. This will impact how much iron you need to take.

    You don't have a vitamin D test result. You need to ask to have your vitamin D tested. If the GP refuses as s/he doesn't consider you housebound - you must point out if you work in an office all day then are too sick to do anything else and then mention the word "housebound" - then must do the test privately. City Assays, a lab from an NHS Trust in the Midlands, provides the cheapest test. It is about £30 and it is a pin prick test you can order online.

    It is no good taking vitamin D supplements without being tested for vitamin D deficiency as you can be deficient while still taking supplements as you are not taking enough.

    Both low iron and low vitamin D cause extreme fatigue separately and together.

  • Your results that you have seem good except the iron. Like Marz says that could be the problem.

    If you still feel bad though it could be a conversion problem from T4 to T3 difficult to tell without more labs. You may also have Hashimotos but without testing thyroid antibodies it's impossible to know. Do you have gut problems.

    Have you thought of private blood tests to find out properly what's going on? Not cheap I'm afraid but to me they weee vital.

    Bluehorizonmedicals.co.uk have good tests. Thyroid plus 11,12 or 15 are all comprehensive tests.

    I was in exactly the same boat as you with menopause being blamed and yes I changed to NDT. Best thing I ever did.

    I'll pm you a link to where I get mine, I'm on Thyroid S

    Check out my past posts too as there's one called things that help. I've listed the things I have found that have helped me and others have too.

  • Could you pm me as to where you get your Thyroid S? Many thanks. Grammijee.

  • Good call re the vitamin D from Bluebug. Should be around 60 no lower, your Dr won't tell you this though!

  • 60 is good in the ng/L measurement but 100 in the UK pmol/L one ..... or is it nmol/L 😊

  • I switched from Levo to Naturethroid about two years ago after three years of feeling awful. My integrated doctor also suggested removing dairy, grains and sugar from my diet. Now I'm healthier than ever. Weight is stable, no more aches and joint pain, no migraines or brain fog.

    Changing to NDT alone won't fix the problem it has to be a combination of diet, medication and I also practice yoga and walk a lot. Good luck

  • the immediate problem is your ferritin is only 16

    without ferritin being at least halfway in its range your body simply cannot

    utilise the levothyroxine and convert it into t3

    theres no ref ranges on your results

    and no free t3 result

  • Hi, your ferritin is low. Should be at least 50. Before supplementing with iron consider a full viral and parasite test. Genova do one. Sometimes the reason for low iron can be the body reducing its stores to not feed such infections. Especially test for EBV.

    Consider following the autoimmune paleo diet and see if u feel better. Bring on medication does not mean your condition will not worsen if the conditions remain unchanged. Good luck and remember, there is hope to feel better by asking the right questions (in testing) and taking control of your health, which you are.

  • I felt exactly the same and my blood work was in range. I added T3 and it changed my life. My specialist explained that although my tests showed i was in range, my brain was not converting the T4 to T3.

    Within a week of adding T3, I was back to normal.

    It is sad that there is such a different approach by NHS GP's.

    Mine is amazing and will test for everything whenever I want.

    My suggestion is to change doctor surgery. Go to the GP with print outs of the evidence showing that some people need both medications to function.

  • Sounds like me! I went back on HRT yesterday, it helped before with fatigue anxiety a bit.... I'm 44 I am going to get all results together and get a private opinion as I'm losing faith in GP fast.

    I wish you well

  • Welcome to the forum, Strydom2888.

    Ideally your GP will do a full iron panel and full blood count as low ferritin can indicate iron anaemia. If your GP won't do this you can supplement iron to raise ferritin. Take each iron tablet with 1,000mg vitamin C to aid absorption and minimise constipation. Take iron 4 hours away from Levothyroxine.

    You appear to be adequately dosed on 125mcg Levothyroxine as far as one can tell without a FT3 result.

    B12 725 is very good.

    Most members using dessicated thyroid hormone (NDT) have a private prescription or buy online and self medicate because NDT is not licensed for UK use and is therefore rarely prescribed on the NHS.

  • Hi Strydom, Treatment for Hashimoto's is a disgrace. In fact the medical profession doesn't treat it, they replace a part of the hormone your own thyroid is not producing and that is not enough because you still have Hashimoto which is an autoimmune condition.

    Just determine that you can help yourself and forget about doctor's opinions. You are probably malnourished and your body needs those nutrients. Have you ever had antibody tests? We are not doctors here but in your condition I would try what ab1 said and add a tiny amount of T3 and because your FT4 seems relatively high (check the range) I imagine your FT3 is low. Try to eat good proteins and fats like coconut and fish oil. Just don't give up because you have been surviving on the poorest treatment for Hashimoto that exists. You can do better. Many alternative doctors are helpful like this one:

  • Hi Strydom2888, good advice above. To answer one of your questions about switching from Levo to NDT: yes, I did that. I did it before I knew one should do it gradually. I felt desperately ill on a new brand of Levo after Forrest Pharma got bought out and the day after my last Levo pill (125mcg) I just knocked back 1.5 grains of my new 'script, Armour NDT. I am not suggesting you do it that way but the effect was like going from night to day within 20 minutes! I would never look back.

    Heed what Clutter has written though, you will probably have to get a private prescription then buy the NDT online, I recommend contacting the actual manufacturer (Activis) who will sell it so long as you have a prescription - or they might give/email you names and tel #s of distributers who will do the same. I called them once and they were very helpful. They are in the US so perhaps you should email them rather than telephone.

    Hope it works out for you, I too was terribly ill on the wrong brand of Levo now I am normal and oft times really great!

  • The greatest problem with trying to get control of thyroid dysfunction after having gastric bypass is that nutrient deficiencies tend to compound following the bypass. It is much more difficult to get enough nutrients from the foods you eat, as well as from supplements, when there is very little stomach acid to process them.

    The problem of nutritional deficiencies in patients before and after bariatric (gastric bypass) surgery has been known for decades:

    ncbi.nlm.nih.gov/pmc/articl...

    There is no doubt you are not absorbing enough nutrients to make use of Levothyroxine (T4). Levothyroxine must be converted by vital nutrients already in place for it be converted into the active thyroid hormone T3. It is obvious you are lacking key nutrients to carry out that process.

    Using an NDT product, which contains both T4 (38 mcg) and T3 (9 mcg) could be quite helpful to you. At the very least, it is a start by way to get T3 immediately into your body. While taking NDT you can address your nutritional deficiencies so that you'll eventually restore conversion of the NDT's T4 portion as well.

    An integrative physician or holistic practitioner can get your body back in balance and get NDT for you. It appears you are in no condition to have a fight on your hands to get the thyroid hormones your body needs most. The vast majority of conventional medicine doctors are ignorant about NDT and T3 -- they often prefer to believe myth and legend instead.

    Integrative, naturopathic physicians know the value of T3 and how the body is merely a ghost of itself without an adequate amounts in all cells. The gastric bypass surgery you had makes it even more difficult for you to maintain even minimal absorption of your current thyroid hormone replacement. This is a very common problem that occurs, especially with a person who is hypothyroid. Conventional doctors act like they don't know any of that. It's pretty sad. In the meantime, those with absorption problems continue to suffer needlessly as they cannot convert the T4 that's been prescribed. So the patient feels worse each and every day thereafter.

    "Worsening Hypothyroidism and Multiple Nutrient Deficiencies Following Gastric Bypass: The Importance of Close Monitoring

    " posted by Kirandeep Khangura M.D. The Conclusions were that:

    The pharmacokinetics of levothyroxine and bioavailability in particular can be impaired based on the manner in which the medication is taken; levothyroxine is best absorbed in an empty stomach and is not to be taken with other medications

    The gastric bypass procedure probably caused further alteration in absorption of thyroid hormone as also other nutrients: iron, calcium and vitamin D.

    Following gastric by pass procedures it is important to follow patients for nutrient deficiencies, as shown here; they invariably occur with time

    linmed.wordpress.com/2009/0...

    But conventional doctors don't follow-up on such things! And yes, it is obvious to anyone who has had gastric bypass that they can no longer absorb many vital nutrients. So one wonders why nutrients and hormones are not assessed prior to approval of gastric bypass surgery in the first place! This is where integrative/naturopathic/holistic physicians excel.

    I hope this helps you. Healing Hugs!

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