So after doctors advice I've had a full week off levothyroxine.
I can honestly say I've felt the best I have for a while .
Pros... not as anxious, no dry or puffy eyes, more energy (I actually went for a run first time for months) , not as suppressed or dazed , not as much throbbing in throat , and could feel libido returning, also not as much brain fog.
Cons.. blurry vision still there , started to get cold hands and feet again , felt a pressure on my head(squeezing sensation) , had to take a little afternoon nap.
So what is happening now the doctor has told me to re start levothyroxine(she doesn't want to leave me with nothing)and she has referred me to a specialist.
Doc seems to think the levothyroxine doesn't agree with me and there is nothing she can do for me apart from the referral.
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Johnljc
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If you have a thyroid condition stopping Levothyroxine is not something you do, and if your GP has agreed to this then they are not helping and you need to find another GP.
I did the same as you (not my GP’s orders though) as Levothyroxine did nothing for me despite my blood results looking good.
Like you I felt fantastic for the first week, but things started going downhill fast.
However, I had a backup plan as I started to self medicate on NDT.
Having quickly looked back on your results your thyroid results are still not optimal, you were on 100mcg then reduced to 50mcg.
You have also been given some very good advice by the regulars, 3 weeks ago.
You do need to give it a chance re testing every 6 weeks and don’t take your Levothyroxine on the day of your blood test, otherwise this will give you a false reading.
You need to test TSH, T4 and T3 just testing TSH and T4 is not sufficient.
Vitamins really do play an important rule in the thyroid function as well.
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
It’s a well recognised phenomenon....if you stop taking levothyroxine, initially symptoms improve...but it doesn’t last
Either results in dramatic and scarey crash 10-20 days later... or a slow steady decline
When hypothyroid vitamin levels slowly drop, cholesterol rises, energy levels reduce etc etc
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
As you took levothyroxine before last test this gave false high Ft4...but TSH shows you were very under medicated
Likely Ft3 extremely low
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
They are taking less Levothyroxine than my elderly father and I think they might start to feel worse very soon if they don't take Levothyroxine. They need a higher dose imho. (just had to re-type this because it did not make sense)
I have only ever had levothyroxine as that is all the doctors can prescribe..... that's why dr has referred me to a specialist as he has the power to prescribe different medications
Well Michael Gove's wife Sarah Vine gets NDT and I think we should all have the same choice. I got mine from Thailand because my GP would not give me Levothyroxine when I was going through a hypo period with my Graves' disease. Sometimes if Doctors don't help us we have to take our own health into our own hands. That is what I did with help and advice from other sufferers .... I had no choice I was desperate to feel well again.
I think the point is that NDT works better, for some, though I started on that as I self-medicate. Last year I swapped from a US pharmaceutical brand (RLC) to a form sold here as a supplement (Metavive). I have found it just as good, & worth every penny with regard to my general wellbeing. It's something to consider along with making sure your micronutrients are optimal & working well for you.
NDTs (natural dessicated thyroid hormones) were the very original prescriptions for people who had hypothyroidism.
This was before blood tests were introduced to diagnose hypo. Before that, we just died.
Initially, due to all doctors being aware of all clinical symptoms patients got a trial of NDT (made from the thyroid glands of pigs and maybe more conducive to some people for whom levo doesn't relieve our clinical symptoms. There were no blood tests then, only clinical symptoms and the aim of NDT was to erase them, with small increases.
It used to be prescribed by the NHS but, for some unknown reason, after being used for years, the Association decided to withdraw this hormone replacement and used False Statements in order to do so.
People have had to resort to sourcing their own.
The only 'other' thyroid hormone replacement in the UK is liothyronine (also known as T3 - this is the Active Thyroid Hormone, whereas T3 is inactive and has to convert to T3).
T3 was withdrawn from being prescribed due to the immense raise in cost. They did this without notice and caused panic amongst those for whom it was prescribe.
Our 'mother' website i.e. Thyroiduk have done their utmost and met with The Lords in order to get it prescribed again and it was agreed as long as an Endocrinologist prescribed it could be.
I know that they will only do this is exceptional circumstance.
One of Thyroiuduk's 'experts' now deceased wrote a Rebuttal to the BTA et al and despite three yearly reminders to them before his accidental death, they never did respond.
He was an expert in the use of T3 which he also had to take himself:-
If you've been reading on here for a while, you must surely know that that is how it works. If you stop taking your levo - or T3, or NDT - at first you feel absolutely wonderful! Best ever! But, it doesn't last. Little by little the symptoms come creeping back in again. It happens to everyone.
But, that does not mean that levo 'isn't working', or isn't right for you, or whatever. It's just something that happens and no-one knows why.
If you are hypo for whatever reason - and you have Hashi's, so it's only going to get worse - you need some sort of thyroid hormone replacement. You cannot live without it. With any sort of thyroid hormone replacement, you have to start low and build up slowly. With levo, that means starting on 50 mcg and increasing by not more than 25 mcg every six weeks. If you increase too quickly or too slowly, or by two much or by too little, it is going to make you feel worse. It has to be done properly. And the problem often is that doctors have no idea how to do it properly. Nor do they know that your nutrients need to be optimal. Etc. etc. etc. Your doctor doesn't seem to know much about it at all, and that's why you're here. But, you need to listen to what people tell you. And, stopping your levo for a week goes against everything we advise - unless you're having a Hashi's 'hyper' swing. Were you having a Hashi's 'hyper' swing?
The first step to getting well is getting proper testing:
TSH
FT4
FT3
(no need to test antibodies because you know you have Hashi's)
vit D
vit B12
folate
ferritin
Then you'll be able to see more clearly where the problems lie. Apart from being on too low a dose of levo, for too long, it could very well be that you cannot convert it to T3. But, you won't know unless you get the FT3 tested. So, that should be your very fist step, and the first thing to ask the endo when you see him.
Starting back on 75mcg .....then getting blood test 6-8 weeks after being on CONSTANT unchanging dose levothyroxine
Always get same brand of levothyroxine. Many people find different brands are not interchangeable
Teva brand upsets many, many patients
Ask GP to test vitamin D, folate, B12 and ferritin NOW
PLUS coeliac blood test too
Come back with new post once you get vitamin results
Low vitamin levels are extremely likely when under treated
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
Why would you be here if you felt confident your Doctor is helping you? A lot of people come to sites like these because they are not feeling well and need advice off other sufferers. If you read my story you will see I went undiagnosed for over 2 years and actually was helped by Elaine Moore's site in the US who told me my TSH at 0.002 was suppressed. From my experience I have found that Doctors go by the TSH which is a pituitary hormone and not a thyroid hormone and does not give a good indication of thyroid function. All the members on here can do is share their knowledge and experience with you and it is up to you what advice you take. Good luck.
Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.
Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.
There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms,
Levothyroxine can decrease serum homocysteine level partly; still its combination with folic acid empowers the effect. Combination therapy declines serum homocysteine level more successfully.
I am not surprised you feel cynical and all of the suggestions members make is due to them finding what eventually helped them.
I know precisely how long it takes for doctors (any doctors) to diagnose and treat someone who is hypothyroid.
I have personal experience of this and it took me (I had never heard of hypo previously - neither did I know someone who had it) - and it proved to me that neither did any of the specialists I paid or A&E or doctors whom I consulted and paid over a number of months.
I was never diagnosed with one of the commonest autoimmune conditions but they always diagnosed something I didn't have - probably so they got a payment:
I was diagnosed by yet another 'specialist' for another condition I didn't have:
Had an operation to remove a 'web' which I didn't have.
I Was phoned ny a GP after I told him I would have to have a whole body check as there was something seriously wrong. He told me he would do all tests necessary as I might be diagnosed with something I did not have. (he didn't notice the TSH was 97.5. This coincided with my own blood test at hospital and another doctor was phoned and asked why they had ignored this TSH which was now 100.
The fact is that I was never diagnosed with something I did have - a common autoimmune disease.
Discharged by the A&E after an overnight stay 'as high cholesterol' and had to run on a treadmill. (two days before I diagnosed myself). GP had not noticed a TSH of 100.
All of this was because I had a TSH of 100 - not one and many who were paid could not diagnose me at all and it was a First Aider who assisted me onto a 'plane who suggested a word I'd never heard before. i.e. hypo.
Why on earth is a common autoimmune condition missed or misdiagnosed and then prescribing a replacement which might not help the patient recover their health?
It is due to doctors and endocrinologists - in these modern times - relying upon (if they take any at all) a blood test (I never did get one until a first aider suggested it to me). I was discharged several times by A&E - once as 'probably viral' - another gave no diagnosis (this was 2 days before my self diagnosis). Finally, I was diagnosed after being discharged from A&E and running on a treadmill with a 'probably viral plus a high cholesterol'. High cholesterol should have been a red flag but doctors nowadays know none of the 'red flags' which doctors in the past used for diagnosing a patient because no blood tests had been available then.
I assume many people are diagnosed with another condition altogether.
Thankfully I found Thyroiduk and due to them I have found my way back to good health.
So all of the responses you've had on this forum is due to those who've suffered and trying to assist you in your struggle and trying to assuage your experience.
Thousands of people worldwide remain undiagnosed because the professionals do not now know any clinical symptoms which all doctors in the past did. Many (like my dozen) doctors have no knowledge whatsoever and I doubt they're aware of anything. If they think of it, and take a test, as long as TSH is below 10 and ignore symptoms, they do not diagnose.
Millions worldwide recover their health on levothyroxine but will not be searching forums for help/advice.
Those that do are helped/assisted by forums such as this, or Stopthethyroidmadness etc. But none have a forum such as this one which is question/answers/support.
Activis, Alumus and Northstar are all Activis inside the box. Probably the most easily tolerated and widely available
Don’t get electronic prescription sent to one pharmacy Collect paper prescription from GP and this enables you to find a pharmacy with correct brand you need. Small independent pharmacies often the most helpful
Article on different brands not being interchangeable
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Teva brand is lactose free....but instead contains mannitol. Mannitol changes gut flora
Merck makers of a French levothyroxine causes huge upset to patients when they changed formula to include mannitol
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