I initially had bouts of anaemia and tiredness throughout the early 2000s and was diagnosed with Hypothyroidism around 2010. I was told that my excess weight would drop off me after being prescribed Levothyroxine. That didn't happen but I did get side effects and symptoms of an underactive thyroid still.
I lived in Europe for a couple of years and took the equivalent of Levothyroxine but I found I woke up with hoarseness and couldn't speak properly for an hour or so, my hair thinned, my joints ached and at times felt I was walking on broken glass. I did some researching and found a natural practice in the UK which was all about integrative medicine and combined GP experience with homeopathy.
I returned to the UK in 2017 and was told by a practitioner, a thyroid specialist of 30 years there who has since retired that I had Hashimotos and gradually switched to Metavive. The dosage has varied and recently after doing periodic finger prick checks with Medichecks online, I increased from 1 x Metavive II and 1 Metavive 1 per day to 2 x Metavive II about a month ago.
My last full blood tests were over two years ago and it showed I was pre diabetic. I don't drink alcohol, have never smoked, have been pescatarian for almost six years and try to do my best to eat healthily, walk regularly and swim weekly. My weight stayed the same, very difficult to lose it even though I live a reasonably healthy lifestyle, always active with helping out with grandchildren and having lots of vegetables and supplements, some prescribed by my thyroid specialist, such as Cinnamon and Chromium Complex, others like vitamin D 4000 iu and multi vitamins with iron, I just buy online.
A week ago I had abdominal pains and repeated vomiting and taken to A&E. My blood pressure was over 200 and was still around 183 during the week and I felt unwell all week. I had already booked a full blood test following a review with the Thyroid specialist from the Natural Practice as he wanted me to get my iron levels, Hba and cholesterol checked. Following my last finger prick check which showed a raised TSH level of 4.91 and free thyroxine which was too low at 11.5. My BP was recorded a couple of days ago and bloods taken.
A month ago I increased my dosage from 1.5 x Metavive II to 2 x Metavive II knowing I had my online appointment with the specialist booked. He said to review in the spring as it maybe I would be taking too much. I now have an ECG booked and awaiting my blood test results to determine why my blood pressure is so high. I was prescribed 5mg Amlodipine to be taken at night and I am now awaiting results of tests to see where I go from here.
So there are some uncertainties at the moment. I've emailed my thyroid specialist. I haven't had a lot of contact with my GP surgery though they prescribed the blood pressure tablets following my blood pressure being taken there and having bloods taken also. My ecg is only a couple of days from now.
I moved home during the lockdown period and was overdue for a general full checkup though I haven't had high blood pressure in the past that I am aware of and now I want to know what to do for the best. The heart flutterings and feeling generally unwell were frightening. I have lost over half a stone so that's a good start and I haven't felt pain in my knees for over a week.
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T3 is the active thyroid hormone and for good health must flood nearly every cell in the body by way of a constant and adequate supply
If T3 is low metabolism is slow...amongst other things it causes fatigue and weight gain.
Thyroid weight gain is unlike that caused by overeating! Reducing food intake will not solve the problem.....thyroid function needs to be corrected.
Many find a gluten free diet helps with Hashi symptoms...Hashimoto's is a common cause of hypothyroidism and it will cause occasional swings to overactive level which upset your thyroid hormone levels until the these levels drop down again. No special treatment required...the swings are transitory.
Metavive is a supplement with unspecified hormone content, in that it is different to prescribed replacement thyroid hormones....so you cannot calculate your thyroid hormone intake.
The Metavives may help some but certainly not all....
I suggest you need a full thyroid test to include...
TSH, FT4, FT3, vit D, vit B12, folate, ferritin and thyroid antibodies TPO and Tg
Many of us test privately using the following labs...
Tests should be done at 9am and at least an hour away from food and drinks, 24 hrs away from last T4 dose and 12 hours for T3.
T3 is one of the most important hormones in the body but for rediculous reasons many medics don't seem to understand this....science proves this to be true but they often base diagnoses and treatments on established unreliable beliefs rather than on scientific facts!
Thank you SO much. I didn't expect to get replies so quickly. Yes I get my thyroid checked through Medichecks and my results showed the two areas that needed attention - raised TSH 4.91 and low free thyroxine 11.5. I have avoided the GP surgery as that was meant for all other problems but until now it was my thyroid that was the problem. I was diagnosed pre diabetic around the time of the lockdowns so didn't see a GP. Still haven't, only the practice nurses and the doctor at the hospital. My doctor at the Natural Practice lectured doctors in Homeopathy and he is on board with what suits me but I have to pay of course and it isn't cheap. I've just had a full blood test on Friday so waiting to see what that shows. Unfortunately as you probably know the NHS gold standard was outdated a long time ago and doctors generally aren't trained in the issues with the thyroid. If I don't get the information I want from these tests it will be back to Medichecks for the thyroid ones. I'm taking 2 x Metavive II now though they ran out so I've got the Metavive I which I take 4 a day. 2 x Metavive I = 1 x Metavive II. Thank you again.
I agree wholeheartedly with DippyDame . You must get proper blood tests done ASAP. Your Gp will be unlikely to do a full thyroid blood test and you will waste time trying that Avenue. Not sure why your ‘specialist’ is not monitoring those him/herself.
Hi, I sent my last report from November to the Natural Practice and told him I'd increased the Metavive based on the low free thyroxine and increased TSH. He's given me supplements and said to do another test and we would talk in the spring. He did suggest that winter time my thyroid might need more but maybe reduce in the next few months. It's all a bit concerning. We really have had to become our own doctors in some respects. I get my blood test results in the next few days. Back to Medichecks for further thyroid testing after that I expect. Thank you.
A lot to upack in your post, but let's have a go...
I lived in Europe for a couple of years and took the equivalent of Levothyroxine but I found I woke up with hoarseness and couldn't speak properly for an hour or so, my hair thinned, my joints ached and at times felt I was walking on broken glass.
OK, so what you're describing there are hypo symptoms. It's not in the least unusualy to find that symtoms exacerbate on starting thyroid hormone replacment (levo) or that new symptoms appear. It's just your body protesting about having had to try and survive with thyroid hormone for so long - and it usually is a long time between developing thyroid problems and diagnosis/treatment. But, these problems should disappear with time and correct dosing.
So, two possibilities:
a) your dose was too low
b) your body wasn't very good at converting T4 (levo) - which is basically a storage hormone that doesn't do very much until converted into the active hormone, T3
It has to be said that doctors know next to nothing about thyroid - and this is a universal problem, there training is inadequate. So, they don't take conversion into consideration - possibly don't even know what it is - and believe their job is done if the TSH (which is all they look at) returns to somewhere within the range - anywhere will do!
I did some researching and found a natural practice in the UK which was all about integrative medicine and combined GP experience with homeopathy.
Warning bells begin to ring! Integrative medicine and homeopathy are all very well - in their place. But their place is not treating thyroid. A good homeopaty doctor will tell you that: a) they know no more about it than any other bog-standard doctor, and b) homeopathy has no effect on the thyroid.
was told by a practitioner, a thyroid specialist of 30 years there who has since retired that I had Hashimotos and gradually switched to Metavive.
Why? In what way did he think Metavive was superior to other forms of thyroid hormone replacement, when you don't even know how much hormone you're taking? To succeed, thyroid hormone replacement has to be carefully titrated, starting low and increasing slowly. Not different doses jumping around from day to day. OK, so it's made from animal thyroid, so I suppose that counts as 'natural' (hate that word! it covers a multitude of sins!). But so does Armour, Thyroid S, and other brands of NDT. Why not one of those so that at least you can calculate your dose and take the same dose every day.
How was the Hashi's diagnosed? Did he test your TPO and Tg antibodies?
recently after doing periodic finger prick checks with Medichecks online, I increased from 1 x Metavive II and 1 Metavive 1 per day to 2 x Metavive II about a month ago.
Can you post the results and ranges of that test, please? So that we have a clearer idea what we're talking about?
My weight stayed the same, very difficult to lose it even though I live a reasonably healthy lifestyle, always active with helping out with grandchildren and having lots of vegetables and supplements, some prescribed by my thyroid specialist, such as Cinnamon and Chromium Complex, others like vitamin D 4000 iu and multi vitamins with iron, I just buy online.
More warning bells clanging away there!
As DippyDame says above, hypo weight-gain has next to nothing to do with what or how much you eat, or how much exercise you get. In fact, not eating enough, and exercising too much can make it worse! It's basically down to a low metabolism caused by low thyroid hormone levels, and is far more likely to be water-weight than fat. And dieting and exercise will not get rid of that.
Do you know why your 'thyroid specialist' has prescribed cinnamon and chromium? Is that to do with your pre-diabetes? Because I doubt it's going to do much to help your thyroid. But cinnamon will reduce glucose levels in the blood.
Did you get your nutrients tested before starting supplementing: vit D, vit B12, folate and ferritin? We often do need supplements when we're hypo, due to low stomach acid making absorption difficult. But, we should have a base-line before starting, and supplement according to the results. Taking things you don't need won't help you in any way, and could be dangerous. And that is one of the reasons we do not recommend multi-vits on here. If it contains iron - as you say yours does, then you will not absorb anything much else because the iron blocks the absorption of most thing - except vit C. And, if it also contains calcium - which you're highly unlikely to need, anyway - you won't even absorb the iron because the two bind together. And, then there's the knotty problem of iodine, which is in most multi-vits and can make things ten times worse.
A week ago I had abdominal pains and repeated vomiting and taken to A&E. My blood pressure was over 200 and was still around 183 during the week and I felt unwell all week.
Sounds like you had some sort of bug. But high blood pressure can be due to under-medication/hypothyroidism. And if your TSH is over 4, then you are still pretty hypo!
So, are you getting full thyroid testing:
TSH,
FT4
FT3
Antibodies not necessary if you're already had positive tests before your diagnosis
vit D
vit B12
folate
ferritin?
Be interesting to see the results. But I very much doubt that you're taking too much Metavive, and would probably be better off on something like Armour or Erfa. At least then you would know how to adjust your dose.
Thank you Greygoose. I appreciate everything you're saying and alot of what you are suggesting are things I'm already thinking I should be doing.
Ok regarding the Metavive, the one I take I can't get online, and the Dr in Winchester prescribes it from their pharmacy.
The doctor who retired didn't do any specific test. I saw him for the first consultation in person and he said I had Hashimotos. He was the one who retired and had loads of videos on youtube about the thyroid. Dr Bernard Willis was his name.
I bought Thyroid S online while I was abroad and he said it had lots of fillers so I waited until I used them up and then went over to Metavive. As I've increased my dosage I should not be hypothyroid but I'll need to get another test done to be sure.
Is Armour or Erfa on the NHS? I was out of the country so just switched to Thyroid S until I came home.
I've been trying to upload the information without success. Anyway the Medichecks results are from 16 Nov 2023 as follows:
TSH 4.91 Range 0.27 - 4.2
Free T3 5.3 Range 3.1 - 6.8
Free Thyroxine 11.5 Range 12 - 22
I definitely had some bug as I was so sick last Sunday. Paramedics took me to A&E. I had anti biotics for three days and anti sickness. I am eating again but only small meals.
Thank you for your suggestions - much appreciated. I felt very scared last week but better today.
Ok regarding the Metavive, the one I take I can't get online, and the Dr in Winchester prescribes it from their pharmacy.
I don't understand that. Metavive as I understand it is an OTC glandular that does contain some hormone but exact quantities are not specified. If it is made in this pharmacy in Winchester, and is prescribed by your doctor, then it is probably not Metavive - brand name - and you should know exactly how much hormone (T4 and T3) is in it.
The doctor who retired didn't do any specific test. I saw him for the first consultation in person and he said I had Hashimotos.
I don't care who he is, there is not way he can know you have Hashi's without either testing antibodies, or doing and ultrasound of the thyroid. So, if I were you, I would add TPO and Tg antibodies to your next blood test to find out exactly what you've got.
I bought Thyroid S online while I was abroad and he said it had lots of fillers so I waited until I used them up and then went over to Metavive.
But they are not the same thing.
Does Metavive - or whatever it is you're actually taking - have less fillers than Thyroid S? Did you actually check out the fillers?
Is Armour or Erfa on the NHS?
You'd have great difficulty getting them prescribed because the NHS does not approve of them! The NHS considers levo to be the gold-standard treatment for hypo and will not listen to any proof to the contrary!
TSH 4.91 Range 0.27 - 4.2
A euthyroid (i.e. no thyroid problems) TSH is around 1, never over 2, and at 3 you are technically hypo. With a TSH at nearly 5, you are pretty hypo. So, it doesn't appear that Metavive is doing its job. Although it looks as if there's some T3 in it because, percentage-wise, your FT3 is much higher in-range than your FT4. But, I think you'd have to increase what you're taking quite a bit to bring that TSH to 1, and hypos usually need it lower than that, because they need their thyroid hormone levels higher.
I don't understand that. Metavive as I understand it is an OTC glandular that does contain some hormone but exact quantities are not specified. If it is made in this pharmacy in Winchester, and is prescribed by your doctor, then it is probably not Metavive - brand name - and you should know exactly how much hormone (T4 and T3) is in it.
It is only supplied from the pharmacy not made there. It was my understanding that it came from pig glands in Northumberland.
add TPO and Tg antibodies to your next blood test
duly noted thank you.
Does Metavive - or whatever it is you're actually taking - have less fillers than Thyroid S?
I don't know the answer to this.
You'd have great difficulty getting them prescribed because the NHS does not approve of them! The NHS considers levo to be the gold-standard treatment for hypo and will not listen to any proof to the contrary!
As I suspected and Levo is so cheap to produce doctors have fobbed people off with this for a long time. I haven't had anything prescribed from an NHS GP surgery for my thyroid since before I left the UK. (Incidentally, I was a member of the Stop the Thyroid Madness Europe group but there have been issues with moderators and I believe the owner Janie Bowthorpe has or will be 'pausing' the group until resolved. I haven't seen many posts for some time.)
It is only supplied from the pharmacy not made there. It was my understanding that it came from pig glands in Northumberland.
I believe they do porcine and bovine versions. But, I've never taken it, so don't know the details. I'm rather dubious about the origin of the pigs, though! They could come from anywhere. What I do know is that it's always a good idea to know what you're taking - what exactly is in that pill? You stopped taking Thyroid S because you were told that it contained to many fillers, but you didn't question the quantity of fillers in the Metavive. And, of course, it does have fillers, you can't make a tablet without them.
As I suspected and Levo is so cheap to produce doctors have fobbed people off with this for a long time.
To be honest, I don't think it's just about money. Probably one part mercenary, to ten parts ignorance! They just do not know anything about thyroid hormones, what they do or why we need them. They were taught in med school that levo is all anybody needs, and if the patient is still complaining he must be a nut case, send him to a psychatrist! Which is why we all have to learn about out disease and stand up for ourselves.
If you don't mind me saying so, I can't help feeling you've gone about treating your hypo in a rather haphazard way, trusting the wrong people. And I say that because none of it seems to be doing you any good. If I were you, I'd start again and first get the proper testing done - hormones, antibodies and nutrients - and then get yourself on to some known quantity of thyroid hormone replacement, and take it from there. If you want to self-treat, we will always be there to help you.
Thank you for your comments. I've done what I thought was the right thing. Support has come from people through an online group which doesn't appear to be active now. The rest is my own research and reading. It is good to see people wanting to help on here and I'm thankful for that.
Metavive or not Metavive. Can I just add something here.
Dr P. recommended Metavive to me. I was able to buy it OTC/online and adjust my dose myself. All went well until the rules about OTC medicines changed and the makers of Metavive added extra ingredients - (ribonucleotides). Several of us on here found that the new version disagreed with us. This was about 2020. Dr P had retired so I needed to find someone else.
Initially I went to a naturopath. He told me that some users or their advisers were trying to get Metavive to produce a version for those of us who couldn't use the new version. I think the Natural Practice were mentioned. I was offered a chance to try the new version, but I decided not to. I had previously used the Natural Practice and I know that they have their own pharmacy. I wonder if it's this alternative version which is now being produced, but is available from the Natural Practice pharmacy, not online.
I now consult a private doctor (from Thyroid UK list) and get prescriptions for levo and T3.
The actual Metavive can be bought online direct from Holland and the price is very reasonable. The only filler is rice bran. It's an OTC thyroid Pigs and Bovine.
You buy it direct not from the Doctor or Pharmacy. They will add on their profit.
Number of fillers is utterly irrelevant if you tolerate all of them in the amounts present.
(The word "excipients" is often preferred. Fillers somehow sounds as if they are only used to bulk the product.)
If a product has ten ingredients, then the amount of each one is likely to be quite small. Cut that down to one and it is much more of that individual ingredient.
Looking at the above labs, what sticks out is the low FT4 with the comparitively high ( ish) FT3.....and that high TSH is a red flag for hypothyroidism this is mainly triggered by that low FT4
So, is this the result of the unknown hormone content in the glandulars....maybe
But it strikes me your thyroid may be struggling to produce enough T4 and is producing more T3 to compensate for this and to keep you functioning.
But, in this situation the extra T3 ( although the level appears adequate)does not usually improve symptoms.
OR.
The unknown hormone content in the glandular is causing hormone levels that clearly are not the correct balance for your body's needs.
In other words your use of glandulars is not working for you and those advising you should have recognised this.
You appear to have been given some very odd advice and the diagnostic protocols/ lack of testing are not robust.
To reiterate....to improve your health you first need to have full thyroid testing as we have described above.
Treatment of thyroid disease is an utter disgrace so we need to learn and take control of our treatment......the collective experience and knowledge on this forum exceeds that of most/ all trained medics!
Don't be scared we're all here to support you...just ask.
I'm afraid the private doctor is on the clock, as nice as he appears so I had twenty minutes to discuss. No examination or tests from here as it's a remote call. I did go in person for my first consultation back in 2017 when I returned to the UK. I put myself on Vitamin D 4000 iu. I took it September to May when I lived in Sweden so just carried on here as we don't get much sun in the winter months. Nothing was said about the Vitamin D. I email everything including my test results to save time. Do you mean Vitamin K? I think I took that for a while a year or too back. I've been several times to the GP surgery this week, more than in the last three years. I have been sorting a lot of things out myself tbh. Thank you for your reply.
I’ve popped a link below to a recent discussion on Vitamin D and cofactors. Sometimes a relevant string is a great place to start. I found (and still do) reading others posts incredibly useful. 🤗
I'm so sorry to hear this. A cocktail of horrible events. I have one piece of advice to offer which I hope will be useful. Right at the end of your post you mention heart fluttering and an ecg. Did they not check your heart rate when you went to hospital? I mention this because sometimes heart events and high BP are signals of atrial fibrillation. I have had this condition which unfortunately van develop due to hypothyroidism. The goodish news is that AF can be well managed. AF can be persistent ( you have it all the time) or paroxysmal (you get it intermittently). AF is hard to catch by ecg if you get it intermittently but an Apple watch or similar will detect it. Or you can buy a reliable mini ecg from Amazon. I don't want to clog up the thread (or your brain!) with this topic but if you wanted to DM me later, please feel free. You might find it valuable to join the AF forum if it turns your heart is behaving abnormally.
Thankyou to you and everyone on here for their comments and suggestions. Paramedics took an ECG at home before they took me to hospital. I don't have the hospital report. I'm trying to find out what was recorded. The heart fluttering is intermittent. I'm having one done tomorrow at my GP surgery. It's been a lonely road and I've done what I thought was the right thing. I'll be taking a different approach from now on.
Of course you did. Our health can be complex and it's a journey learning what's best for each of us. I think you are I'm your rights to get the GP to insist on seeing the ecg report from.the hospital visit
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