September last year, total thyroid removal, had graves disease, I'm on 200mcg levothyroxine, feeling breathless, just going up the stairs, putting on huge amounts of weight, when I'm hardly eating, fatigue horrendous, just diagnosed with diverticulitis too. I am exercising twice a week, high intensity interval training.
Recently trying to work with my gp, asked for a reverse t3 test, he said yes, said would take 5 weeks approx. After waiting 5 weeks, Went back to him to find out, that the county I live in, the NHS does not fund this test. I want to be on natural thyroid meds, my gp, or endocrinologist have closed doors, where do I go from here?
My gp surgery were reluctant to give my blood results to me, I'm receiving printouts today from my last 5 results.
For my sanity, I need to be in control of my body, because the way I am feeling, I'm feeling what's the point if I have no choice, or no one in the NHS listens to me, willing to help, or point me in the right direction...
Please someone give me hope 🌞
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Ladymadonn1
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To be honest, the reverse T3 test isn't going to tell you much. Even if it came back with a high level, the test can't tell you why it's high and there are many, many reasons for high rT3 that are not thyroid related.
I am exercising twice a week, high intensity interval training.
That probably isn't doing you much good. Hard exercise depletes T3, and it's low T3 that causes symtoms. Being on 200mcg Levo and putting on weight, having fatigue, etc, sounds as though your Levo isn't being absorbed for some reason.
First of all, do you take your Levo as advised - on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, and water only for an hour either side, as absorption will be affected. Do you take any other medication and supplements 2 hours away from Levo, some need 4 hours (iron, Vit D, magnesium, calcium, plus some medication).
What are you latest test results. For a full picture you need
TSH
FT4
FT3
Thyroid antibodies
and because we need optimal nutrient levels for thyroid hormone to work properly, we also need to test
Vit D
B12
Folate
Ferritin
If you can post results, with reference ranges for these, plus unit of measurement for Vit D and B12, we can comment further.
Natural Thyroid (NDT) isn't the answer for everyone, and many hypo patients do well on Levo alone, or Levo plus T3 if it's found T3 is needed. So the first thing to do is look at your test results, see if there are any obvious problems and go from there.
My brain is mush at the moment, because of that, and with my gp, not really taking control, I have only my tsh and t4:
Tsh 0.08 range 0.27-4.20
T4 20.01 range 12.0-22.0
Don't know why my tsh is so low when April it was 1.71.
I'm having a telephone call with my gp on Tuesday to discuss results, should I ask for t4, thyroid antibodies and vitamin d, b12 etc, is this normal practice when I'm due a thyroid blood test? Thanks in advance
Don't know why my tsh is so low when April it was 1.71.
Results can only be compared accurately if they were done under the same conditions each time. When doing thyroid tests, we advise:
* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.
* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.
* If taking thyroid hormone replacement, leave off Levo for 24 hours before blood draw, if taking NDT or T3 then leave that off for 8-12 hours. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it will give false results (Medichecks definitely use Biotin, they have confirmed this and the amount of time to leave the supplement off).
These are patient to patient tips which we don't discuss with doctors or phlebotomists.
should I ask for t3, thyroid antibodies and vitamin d, b12 etc, is this normal practice when I'm due a thyroid blood test?
No, it's not normal practice but it gives a complete picture and may show why you are still so unwell even though you are on 200mcg Levo.
First of all, testing FT3 at the same time as FT4 and TSH tells us if you convert T4 to T3 well enough. T4 is a storage hormone which has to convert to T3 which is the active hormone that every cell in our bodies need. Low T3 causes symptoms and makes weight loss difficult. My guess is that you have low T3.
Thyroid antibodies tell us if your hypothyroidism is due to autoimmune thyroid disease (Hashimoto's), this can be useful to know because Hashi's can cause gut/absorption problems and low nutrient levels.
Vitamins and minerals need to be optimal for thyroid hormone to work properly, so we need to know if there are any low levels or deficiencies and address them if there are.
Your GP may not be able to get FT3 tested (it's the lab who makes the decision on that test even when a doctor requests it). He may not be able to get thyroid antibodies tested. He should be able to get vitamins tested if he is willing, some will, some wont. Many refuse Vit D as they say it is an expensive test and everyone in the UK has low Vit D levels - which in my mind is an excellent reason to test!
So if GP can't or wont do all those tests, then like so many of us here you might want to do them privately with one of ThyroidUK's recommended labs:
Medichecks Thyroid Check ULTRAVIT medichecks.com/thyroid-func... You can use code THYROIDUK for a 10% discount on any test not on special offer.
Both tests include the full thyroid and vitamin panel. They are basically the same test but with the following small differences:
For the fingerprick test, Blue Horizon requires 1 x microtainer of blood (0.8ml), Medichecks requires 2 x microtainers (total 1.6ml)
Blue Horizon includes Total T4 (can be useful but not essential). Medichecks doesn't include this test.
B12 - Blue Horizon does Serum B12. Medichecks does Active B12.
Serum B12 shows the total B12 in the blood. Active B12 shows what's available to be taken up by the cells. You can have a reasonable level of Serum B12 but a poor level of Active B12. (Personally, I would go for the Active B12 test.)
"Natural thyroid meds" are only natural in so far as you think it is natural for a human to consume the desiccated thyroid gland of a pig or cow, and are discounting the range of inactive excipients added to it, in order to manufacture the tablets. In any case, natural dessicated thyroid meds (NDTs) don't necessarily suit everyone just because they aren't a wholly synthetic product as is Levothyroxine Sodium and Liothyronine Sodium. The other factor is that they aren't licensed for use in the UK and whilst some GPs have prescribed them in the past, in the Nov 2018 RMOC guidelines on prescribing T3, it has been explicitly stated that "The prescribing of unlicensed liothyronine and thyroid extract products is not supported" - hence why you have been refused. Mostly, those who use NDTs source them themselves and self-medicate. As a by the by, the guidelines are supposedly under review but it's intimated that the purpose is solely to clarify what is a confusing and contradictory set of guidelines, but no change is expected to the intent. It is still early days since your TT, and for some people it is a marathon not a sprint, with fine-tuning required along the way, in order to be euthyroid and symptom-free - but without sight of your blood test results it's not possible to identify whether you are yet optimally medicated, and/or converting well; so post your results and their respective ranges, once you have them. Meanwhile, unless/until you are optimally medicated in terms of both FT4 and especially FT3, and no longer symptomatic, hard exercising it not advised, as it uses up T3. Associated with that, is that you need to have optimal nutrition for general good health and thyroid functioning, including good levels of folate, ferritin, Vit B12, Vit D - have you been tested along with your FT3, FT4 and TSH?
Is it normal practice for the surgery, when doing my thyroid bloods check, it should be including the rest of good health and thyroid functioning tests?
No not necessarily. There tends to be a protocol followed at NHS Labs that unless the TSH is out of range, the FT4 isn't tested, and unless when tested, the FT4 is out of range, the FT3 won't be tested either. Vit B12 and Vit D testing is unlikely to be routinely ordered unless symptoms indicate a need. Hence why many of us here have more comprehensive testing carried out privately, as described by SeasideSusie.
Can you add ranges to those results because they vary from lab to lab, and the FT4 result particularly may be over or within range, depending on the lab used.
The basic facts are very simple: In your circumstances Levothyroxine will never make you well whatever dose you take; even with the addition of an appropriate amount of Liothyronine the chances are you will remain ill for ever; excluding the uncertainties associated with bovine NDT, there is, and only ever will be, a single product (excluding a thyroid transplant) that can possibly return your health to you which is porcine NDT, which you are never likely to get from the NHS under current circumstances.
You can keep taking levo, remain ill and suffer the possibly permanent damage this will do to your health whilst complaining bitterly, unsuccessfully and as loud as you like regarding alternative treatment. OR you can ditch the levo, start on NDT as soon as you possibly can and inform your GP what you are doing and why you are doing it. It would be unwise to keep you actions secret as your doctor would become most suspicious of the results of future blood tests.
How do I go about getting ndt, I'm so confused how to do it, UK based pharmacies, need a NHS or private prescription, how do I do this? What is the best make of ndt? Thanks in advance
in reply to
I am sorry, but this is really harsh. Combination therapy of synthetic t4 and t3 can help you to return to health. NDT didn't work for me because of its proportions (I need more t4). First we need to see what the FT3 result is. Then we will know how you convert hormones. You are definitely missing t3 as your thyroid gland would produce a small amount of t3 directly and your thyroid has been removed. There is no superior product here, we should encourage people to try all options if possible and in a non-threatening manner. Just because t3 didn't suit one person, that might be not case for the other. Both NDT and t3/t4 are good options here.
Hidden Even with all the data at your disposal you cannot possibly forecast someone's health future in that absolute way, and you haven't yet got all the data. Even if with the data, it appears that the OP would benefit from the addition of T3, you can't know if synthetic T3 being added to synthetic T4 wouldn't work brilliantly for her, nor that if she swapped to NDT it would. It doesn't work well for everyone, and for some, it works badly.
I'm with Graves Disease post Radio Active Iodine thyroid ablation in 2005 and became very unwell some 5 years ago.
In the first instance it is essential that you get the full thyroid panel and vitamins and minerals tested as detailed on this amazing site and post the results plus the ranges back on here where people better able than me will talk you through your next steps back to better health, as they helped me a few years ago.
A fully functioning working thyroid would be supporting you on a daily basis with approximately 100 T4 plus 10 T3.
I just think it makes sense that when there has been a medical intervention and the thyroid either surgically removed or burnt out with ablation that both these vital hormones are on the patients prescription for if, and when, required.
Some people can get by on T4 alone, some people simply stop converting the T4 to T3 for some unknown reason at some point in time, and some people simply need both these essential hormones dosed and monitored independently to bring them into balance and to a level of wellbeing acceptable to the patient, which generally means both hormones with be in the upper quadrants of their relevant ranges.
The thyroid is a major gland responsible for full body synchronisation including your mental, physical ,emotional, psychological and spiritual wellbeing. Your body clock and metabolism were running fast with the Graves " hyper " phase and now you are probably feeling burnt out and exhausted and your body clock and metabolism now may feel like you've been " turned off " completely and have crashed into a wall.
Graves is an autoimmune disease and as such it's for life. There is probably some genetic predisposition maybe a generation away from you and I read it can be triggered by a sudden shock to the system like a car crash or a unexpected death. Your antibodies start by attacking your thyroid, sending it haywire, and since it is such a major gland, the symptoms experienced can be frightening and considered life threatening .
Removing the target of the attack, the thyroid will have removed the main symptoms but then it's essential that the appropriate replacement hormones are prescribed.
I was refused a trial of T3 on the NHS last year because of my suppressed TSH. There were no discussions, it was cut and dried before I entered the endo's room.
I then trialled T3 and Natural Desiccated Thyroid myself. They both worked and my cognitive and emotionally well being immediately improved.
I have decided to self medicate with NDT and am 6 months into getting better. I've still to work on building up my stamina but am vastly improved doing it myself.
It's still early days for you, isn't it ? Can you be referred back to the hospital ? Your dose of T4 is relatively high and will, in itself, be making you ill, as it sounds as though you are not converting it into T3. We can only know anything when the blood tests are available.
You might like to read some books ? :-
Graves Disease A Practical Guide by Elaine Moore. This lady has the disease and found no help when she went through RAI in the late 1990's so she wrote a book to help other equally confused patients. She has now gone on to open a Graves Foundation in the States and the website is open to all Graves patients for all things Graves. It is a well respected, researched platform with open forums, much like this site and there are sections on diet, lifestyle, alternative options to mainstream medical knowledge which seems to be sadly lacking regarding the autoimmune component of this disease.
Your Thyroid and How To Keep It Healthy is an excellent goto for all things thyroid. This book is written by a doctor with hypothyroidism, Dr Barry Durrant - Peatfield and is an easy, sometimes funny read about everything the thyroid does and what one has to do when one's thyroid stops performing as it should, and these implications are so relevant to us and we ned to compensate for the total loss.
It's a massive learning curve, there is much to read and reread, but you'll get there.
There is support on here, and if you can't get anywhere with your doctor, don't get upset, get even, we have all been there, don't take it personally, I know, easier said than done.
Email Dionne at Thyroid Uk for list of recommended thyroid specialists who will prescribe T3
Order a full Thyroid and vitamin test from Medichecks or Blue Horizon
Essential to test FT3, FT4 and TSH together plus vitamin D, folate, ferritin and B12
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Getting vitamins optimal is essential.
Breathlessness can be low iron or ferritin
Low vitamins are very common
You might find splitting Levothyroxine into two doses (before bed and waking ) may help too......while you wait to see an endocrinologist to prescribe addition of small dose of T3.
It's far easier to get T3 prescribed on NHS than NDT
Though due to high cost of UK T3 it's difficult to get T3 prescribed on NHS
But a private prescription enables access to cheap T3 from Germany
Roughly where in the UK are you, which CCG area?
Research suggests 20% Patients with no thyroid can not regain full health on just Levothyroxine
I also felt hopeless back in Oct 2015 after my thyroid was removed and for the first time I was put onto various doses of Levo. Before the removal I was swimming, walking and doing my Yoga everyday. After 8 months on Levo I was putting on weight for the first time in my life and was so ill I couldn't even get of the floor without help.
I then joined this site and from then on I have never looked back it took me two years to sort out my medication which I source myself. I take NDT from Thailand and never visit the GP. I am back to doing my Yoga etc and feel great.
First I took the advice on the site by taking a blood test called ThyroidUlltraPlus by Medichecks I then posted the results with the ranges on here for answers. I now take the test once a year just to watch my Vitamins and Minerals as well as TSH etc.etc.
You too can get well again but it takes time the advice you receive on this site will help you to recover.
Here is an idea, you need T3 but your body is not generating any. You may simply be lacking the catalyst for this conversion, Selenium. So take a Selenium (Se) supplement or eat a couple of Brazil nuts per day. This may wake up your inability to convert T4 to T3. Don't overdo Se however you will get selenium toxicosis but you do need some to get the T4 to T3 conversion going.
Oh, and, of course measure your Se level first just to make sure you are deficient. It's not a good idea to take any supplement without first measuring your level. Don't take any supplement if your levels are OK.
Wishing You Lots Of Strength And Lots Of Sympathy . I know exactly what your experiencing and going through . I had TT many years ago and was dosed with high T4 only . I had to be suppressed with very low TSH . I had palpitations running out of breath by the slightest exertion climbing stairs walking fast etc. Weight issues , high BP , anxiety , irritable , panic attacks , thirsty , hair falling out , jaundice , fatty liver, horrific aches and pain , constipation , sweating , insomnia , feeling cold many times , not motivated .
Lowering my T4 significantly was my #1*Great* Step to the right direction for feeling myself again . Getting my FT4 to 1-1 -1.2 made a huge difference and that's when I was able to add low dose T3 . Synthetic T3 did Not work well for me I felt to many peaks and valleys . Instead trading my synthetic T3 for low dose NDT for my T3 made a much smoother T3 mix with my much lower T4 dose . When adding any T3/NDT one *Must* lower T4 *First* otherwise the same hyper symptoms will continue or get even worse . Since T3 is very powerful and fast acting .
Slow and Steady Wins the Game . Give your body time to acclimate with new dose changes . Keep journaling your symptoms with every new dose change and keep running labs about 5-6 weeks with dose changes . Ask for copies of all your lab results and write on them the dose you where on at the time of the labs . Nutrients are *Very* important too they help with our thyroid meds to work better for us .
Vitamin "D"/K2 , B-Complex , B-12/folate , Vitamin "C" , magnesium , Iron if you test low , Celtic Sea Salt for adrenals/electrolytes .
Test your FT3 FT4 TSH , Iron/ferritin , Vitamin "D" , B-12/folate , DHEA-S . Having adrenal/cortisol levels checked via 24 hour saliva would be very helpful too . Go slow and low with T3/NDT doses since it can uncover adrenal insufficiencies .
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