Endo/Specialist Recommendation

Hi

My daughter a few years ago was diagnosed hypo. by Dr. Skinner,

She was prescribed levo. which she did not feel well on.

Her cortisol dropped to 46 whilst on levo. so her G.P. sent her to an endo. to have a SST.

She paid to see a private endo. so she would be seen quickly but we were not very impressed with him.

He did not arrive for the appt. until 10.15 am. and she was not told to fast and was even given cups of tea to during the test. (At the time we not aware all this could effect the test)

When this was done she had stopped the levo. and cortisol had risen to 216 on first blood test. After injection was given result after 1/2 hour was 426 and after one hour 628 so Addison's ruled out.

She then tried Thyroid S. again no improvement.

She did the Saliva adrenal test which showed am. level around 1.8 low midday level and high afternoon and evening level (do not have exact figures at the moment)

She has tried all of the usual things to help her adrenals and then started to self treat with T3 using the Paul Robinson T3CM. She initially found some improvement last year but now feels unwell.

She has sent blood to be tested in Germany for Lyme disease and although she is negative for this the results show she has two coinfections and a supressed immune system.

Her G.P. has wrote to the local Immunologist and Infections disease specialist and she has been sent a letter to say these results are not relevant and they cannot offer any treatment.

 After researching about the infections she has been self treating with the recommended Doxycycline but again no improvement.

Sorry for long winded post but can anyone recommend an Endo/Specialist (by P.M. please) who could look at the whole picture and test and treat accordingly.

Many thanks browny

17 Replies

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  • Hi

    Been there got the T-shirt.

    I'm sorry but I don't think there is an Endo/specialist out there who is capable of looking at the whole picture, testing and treating accordingly.

    Even the private ones seem to have their niches

    Skinner.(RIP) ...Myhill...Hembury  etc don't get me started on most NHS ones! They seem to be one trick ponies most of the time with no desire to expand their learning or keep an open mind.

    Thyroid is a systemic issue  - it affects how the whole body copes/functions

    If it can't be supported enough with T4 T3 NDT for a patient to recover health then I think it makes sense to look for another systemic issue - something that affects the whole body and is obstructing the body in  healing itself.

    We spent probably thousands we didn't have on my daughter and years and years visiting all manner of private docs having all manner of tests ( most of which Docs/Endos wouldn't accept the results of! or had never heard of.  Taken all manner of meds/supplements DHEA etc etc  'high viral load' all adrenal checks etc

    In the end we went the self medicating route with T3, had some benefit, then seemed to get a dodgy batch which made us very ill and pursed NHS to get 'proper stuff' on prescription, which we finally succeeded.

    I joined this forum to fight the CCG's over stopping T3 being prescribed

    BUT one of the great advantages has been I found out that some of my fairly recent , persistent and worsening symptoms that I put down to breaking my ankle and age and ? MAY be low B12, possibly pernicous anemia.

    Hypo and low B12 can go hand in hand.

    Please take a look at this website - it's a REAL eye opener!

    b12deficiency.info/

    Don't rely on NHS blood test.

    Get Doc to agree to believe the finger prick on line active B12 test you can get.

    I'm certainly gonna get my daughter tested too as I can see a lot of symptoms in her.

    we are both Hashimoto low thyroid. taking t4 / T3 mix.

    What I'm saying really

    is if the body cannot find balance it is misfiring probably because it's short of something.

    eg you need zinc to get well.

    B12 seems capable, or rather a lack of it, to be capable of srewing up your whole system.

    I think it would be worth checking

    leave it with you  XX

    ps do not rely on NHS B12 blood test - see web site

    Fingers crossed that B12 may be the missing bit of the puzzle that helps us go from OK to good ( finally)

    It's hard not to be sad and envious when you see people bouncy around with energy and you get through the day - innit?

    Only a suggestion

    x Juliat

  • Hi

    Many thanks for your reply and sorry to hear you and your daughter are having the same problem.

    When my daughter last had her Vit B12 tested it was just over 500 but since then she has been supplementing anyway. She takes a vast array of supplements but I am not sure about zinc, so we will need to look into this.

    Regarding the Active B12, I have actually had this done as I am hypo. and was not feeling better on levo. so thought it maybe B12

    The first time I was supplementing when I had the test and it came back nearly top of the range. I did know at the time to get an accurate result you had to stop supplementing.

    I then stopped supplementing for approx. 12 weeks and then had it rested and the result was just in the normal range. I have read since that you sometimes need to be off supplements for longer than this. Maybe this is something my daughter should do.

    It is interesting what you say about getting a bad patch of T3 as when my daughter initially did improve with T3 she was on a certain brand but she has had two different brands since so maybe these have not suited her.

    You have given me food for thought, thank you.

    I hope you and your daughter can fully regain your health.

    Best wishes browny.

  • I'm sorry about your daughter's and you experience. It's like trying to fight your way through a maze and those you expect to be informative find it's not forthcoming.

    email louise.warvill@thyroiduk.org.uk who has a list of sympathetic doctors. If you select a couple you can put up a new post giving names only and asking for a Private Message to be sent to you of any information which might be helpful.

  • Many thanks shaws,

    I will email Louise.

  • You can have a private blood test from one of our recommended labs and you get a discount when you quote Thyroiduk's code number. These labs cover all of the necessary blood tests and if you decide to have one it should be done at the earliest possible time and fast. If any thyroid hormones have been prescribed allow approx 24 hours from the last dose and the test and take it afterwards. A full thyroid function test is preferable.

    GP should test Vit B, Vit D, iron, ferritin and folate.

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

  • When my daughter felt unwell again whilst taking T3 she reduced the dose to 25mcg. daily and then had her T3 tested.

    The level was slightly under range so would have been much lower had she not been taking any T3, this makes me wonder if she has Thyroid hormone resistance.

    Do you happen to know if anyone does a test for this ?

  • I doubt if any of our doctors know anything at all but the TSH. These are a couple of links which might be helpful. Dr Lowe, unfortunately died about 2 years ago. 

    web.archive.org/web/2010103...

    At the top of the page there are other topics (links within may not work) and there is also Thyroid Hormone Resistance.

    web.archive.org/web/2010103...

    Your daughter might find benefit from NDT as it contains all of the hormones our own healthy gland would have produced. There are two hypo-allergenic ones as well as others.

  • Thank you Shaws,

    I will have a good read of the links.

    She did try Thyriod S which did not suit her but as you say maybe one of the hypo-allergenic ones maybe better.

  • I tried about 3 before I found what that suited me best.

  • I was in a similar position, in that my thyroid bloods became 'perfect', but I was still very ill. I'm only starting to get some serious improvement now I'm self-medicating with NDT. I felt better even with a TSH of 100, and everything below range on NDT than I did with ideal results on T4 & T3. 

    I've mostly given up hope of finding what the underlying causes are, at least for the time being. 

  • Many thanks for replying,

    Do you mind me asking which NDT are you on how long have  you been on it before you noticed some improvement.

  • I'm on Nature-throid. My situation was a bit unusual in that I had advice I may have been overdosed by my consultant the whole time and I may suit a very low dose. So I started out low, and held at 6 weeks on each dose before blood tests and increasing. 

    The initial improvements to my brain fog and sense of self were within a week or two. I'm now on day 12 of a new dose, and I felt a big improvement from day 1. I have had a few blips, though. I felt physically a lot worse on my very low dose, and a few times I've felt terrible for a few weeks when I start a new dose. At 1.5 grains I felt bad for the whole 6 weeks I was on that dose, but it cleared up when I had my next increment. 

    Personally I would always give any new thyroid treatment at least 6 weeks before giving up. 

  • Thank you,

    that's interesting, apart from my daughter trying to get well, I am also.

    I was on levo. for five years and changed to WP Thyroid three months ago but apart from one good week and do not really feel any better, in fact like you some symptoms have returned and I have felt worse.

    I got to 1 1/2 grains and was on that for three weeks but felt spaced out so reduce to 1 1/4 grains. I have been on this dose for two weeks and although the spaced out feeling has gone I do not feel any better. I am even toying with the idea of going back to levo. but I am going to persevere longer and see how I go.

    Maybe like you I need to increase and stay on that dose for a longer period before increasing.

    Best wishes.

  • 1.5 grains is quite a small dose. Were you on a low dose of Levo? By my reckoning that is equivalent to about 120mcg of levo. Many people are on 3+grains. Higher than they would be on Levo. My symptoms returned because I went from a suppressed TSH to one of over 100! So I was not at all worried. I've now got a TSH of about 16 and am feeling transformed. I'm hoping I can increase one or two more times and if I'm lucky get improvements each time. 

    A few suggestions from my experience and reading: 1) Have you posted recent blood tests from either before or after your switch in this forum? People give incredible advice, and there is a lot of information contained in the full set of thyroid bloods that most doctors don't know about. You may have been obviously on a too low dose or had specific conversion problems. If you have Hashimotos, diet can also help a lot. 2) If you've been on levo a long time with poor results, you can have build ups of T4, or rT3 hanging about. The solution to this is to stop taking Levo for a few weeks, until you start to feel bad. I did this and actually felt better with zero medication (I have no thyroid). 

    3) Keeping track of pulse and temperature throughout self medicating is essential. It's only once you've done this for a few weeks /over a dose change or two that you will see the benefits, as it's about seeing your pattern. You will start to figure out what yours look like when hypo or hyper and can tell if things are going wrong. Also I think it's helpful in seeing patterns of what are you're own real marker symptoms. Dr P told me his was getting a cold nose. 

    4) ifyou've read this site in sure you'll have heard this, but it's important to get your ducks in a row with folate, ferritin, B12 and vit D all at optimal levels - this means at least halfway up their ranges. Also get the 24hr saliva cortisol and treat if necessary.

    5)And finally, not everyone suits NDT. Some on here have tried it and do not like it. 

    6) Ooh, another finally, most people increase NDT much more quickly than I have. I've been going excessively cautiously because I may have overdosed on the past, and collecting my thyroid blood tests every 6 weeks as a record that I hope will be useful in the future. But most ppl increase after a few weeks. I'm not sure of the full details, but it's 2 or 3. Usually just continue to increase till you feel better.

    Hope some of that is useful.  

  • Thank you, it is very useful.

    Heck you TSH was high.

    I had settled and was feeling O.K. on 125 mcg. levo. not brilliant but O.K. so thought I  may have needed a small increase but the Doctor reduced to 100mcg because of very low TSH.

    I felt worse so went back but she would not increase but said she would write to the endo. for advice. in the meantime I started  the NDT as I was so fed up of it all.

    I started 1/4 grain for few days then went to 1/2 and have been increasing every three weeks, then got up to 1 1/2 grain and had to decrease.

    I have since heard back from my G.P. who said the endo. said not too worry about low TSH as long as T4 is not over 18. so she is now wilingl to work with me with my dosage and symptoms.

    I felt better on levo. when my T4 has been 19 and T3 was 4.95 both highest they have ever been.

    I am wondering if I now went back on levo. and added a small amount of T3 that would suit me better.

    I have done the Saliva adrenal test and it is not too bad.

    I also did the 24 urine test whilst on levo. and it did actually show I am converting the T4 to T3

    Only thing is I am not sure how I would change back to levo. Not sure if I would have to start low and build up or go straight back to 125mcg.

    Do you happen to know any member who could advise me on this.

    I did post a week or so ago about it but even though I got some replies on one really answer the question, or do I give the NDT longer.

    I do supplement with Vit D Vit B12 B complex Vit C magnesium.

    Just had a vit D test and it is 75.3 range 70 - 125

    Last Vit B12 was over 500 and Folate 17 Ferritin 101

    I had my bloods tested when I had been on 1 1/2 grains and the reduce to 1 1/4 grains before test so result I suppose are unreliable.

  • That is a bit of a dilemma with the doctor! Hard to make that decision. Although if Levo has worked well for you in the past you may be in the 80% or who are fine on it, and if so it's much easier to be in the NHS system I think. 

    Those vit min results look very low to me. For vitamin D you want to be as high as you can in that range, and for all you want to be at least halfway. The folate looks low, the others I don't know without ranges. The B12 may be just the low end of okay, but it depends a lot on the range as that can vary a lot. 

    Vitamin D is very important, and you will feel improvement when it's raised, but the same is true of all. Research the best supplements. If you're borderline deficient you don't want to be on super market supplements, quality matters a lot. For Vit D you want at least in the region of 2000 international units to get an increase. I don't know the others as well. You're better off with one containing K2. I get a liquid by Thorne's you can buy on Amazon. Then retest in a few months if you can, to see if things are rising. Blue horizon do a good pack of all the major tests and vitamins. 

    For dosage most people just swapfrom one to the other if the doses are similar. Expect to feel a bit weird for a few weeks - or maybe instantly better depending on how lucky you are ;)

  • Many thanks for all your advice, very much appreciated.

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