Hi, Haven't been on here for a while as I have not been well - I have Hypothyroidism and Heart disease (which I believe this was caused by 30+ years of untreated hypothyroidism) and now have been told I have Fibromyalgia (constantly in pain and other problems) the doctors are guessing all the time and not running any tests, was reffered to an endocrynologist, but he cancelled the appointment, telling the doctor to balance my meds instead, I then got referred to a rheumatologist as requested by my cardiologist, but was turned down again and the doctor was told to consider fibromyalgia instead. Almost a year from starting with the pains etc., I have now been referred to a pain clinic, but with no proper diagnosis or blood tests ? I was told to keep a check on my eting habits as I am putting on loads of weight but all the things that are healthy (greens such as broccolli, cabbage, brusseles etc) are to be avoided because of the levothyroxine ? I am so confused as to what to eat - I was going to start using soya but turns out thats a no-no too. Anyone on here able to suggest what food I should eat ? Should also mention I have acid reflux, angina, IBS (so gluten free) and high blood pressure. Anyone else got a similar set of symptoms ? Thank you in advance.
Hypothyroid + Heart Disease + Fibromyalgia Diet... - Thyroid UK
Hypothyroid + Heart Disease + Fibromyalgia Diet ???
In earlier posts I read your VitD was low. How is the level now ? Are you taking K2-MK7 and magnesium ? Both important co-factors when taking VitD and good for heart health too 🤔
Hi,
I was told to buy suppliments of vitamin D at 25ug so I take this daily - I also take a basic multi vitamin but the doctor (I say doctor but the surgery uses nurses for appointments now only reffering to a doctor if they think they need advice but you cant see a doctor yourself) won't test for anything except TSH which i'm due for in November but they keep saying it's within normal range - I had to insist they put me back onto the original dose of 125mg again as, after a year of them reducing it and messing about, I was struggling - now slightly improved on 125mg but fear they will reduce again if it's not in their normal range - They say they don't test for T3 unless the lab decides it's needed and recomended I take gabapentin for fibromyalgia but I don't agree with their diagnosis - I have inflamitory markers for last few tests over the last 11 months but they have done nothing except reduce levo and wont do any other tests ?
25ug (1000iu) vitamin D is only enough for a small mouse. If you had low vitamin D you likely need higher dose
Do you know how low vitamin D result actually was?
Local CCG guidelines show amount to supplement depending on actual results
clinox.info/clinical-suppor...
Aiming to improve vitamin D by self supplementing to at least 80nmol and around 100nmol may be better .
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Retesting twice yearly via vitamindtest.org.uk
Vitamin D mouth spray by Better You is good as avoids poor gut function.
It's trial and error what dose each person needs.
Government recommends everyone supplement October to April
gov.uk/government/news/phe-...
If vitamin D is low, B vitamins may be too. As explained by Dr Gominack
You are legally entitled to printed copies of your blood test results and ranges.
Important to know what has been tested and equally important what hasn't been tested yet
UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Find out how low vitamin D was, see if B12 and folate were tested of ferritin
Oh dear! It really does sounds as if you're terribly under-medicated! Doubtful you have fibro, that's what they say when they don't understand how to dose hypo. When did you last have blood tests?
all the things that are healthy (greens such as broccolli, cabbage, brusseles etc) are to be avoided because of the levothyroxine ?
No, not at all. That's just a mish-mash of half-understood information about goitrogens. You can eat them, as long as they agree with you. They don't have any effect on levo.
A goitrogen impedes the uptake of iodine by the thyroid gland. If you're hypo and taking levo, that really doesn't matter, does it? Because your thyroid isn't working, anyway. And a person who isn't hypo and taking levo would have to eat an awful lot of them for them to have any effect. Like, cabbage soup every day for years. So, I wouldn't worry about eating them, if you like them.
Yes, you do have to avoid soy. Because, whilst soy is also a goitrogen, it has other, even worse properties. It impedes the uptake of thyroid hormone by the cells. So, you can have good levels of thyroid hormone in the blood, but still be hypo. So, avoid that.
Some people, especially those with Hashi's, feel better on a gluten-free and/or dairy-free diet. But, not everybody. It's just something to try if you have Hashi's, because you can be gluten-sensitive, even if you don't have Coeliac Disease.
Other things that everyone should avoid are artificial sweeteners and processed seed oils. But that also goes for people who don't have a thyroid problem.
Apart from that, eat what you enjoy. But, go easy on the sugar, of course. Doing avoid fat and salt, your body needs them, and avoiding fat won't make you lose weight! If you're gaining weight, it's because you're under-medicated. Such a pity doctors don't understand that! 
Thank you for that - I do eat most greens and I am gluten and dairy free already because of the IBS (doctors orders) I have to be careful with the sat-fats because of the heart disease - but now have been told to avoid salt due to high blood pressure and cut down on Sugar which I already had but was advised to take it easy on fruit and not to juice it ? I have been making smoothies with bananas and berries but now im not sure if they are good for me ? - I'm hungry all the time and control my intake, but still im gaining weight
You're more than likely gaining weight because you're under-medicated, nothing to do with what you do and don't eat. It's a hypo symptom.
Well, now, what can I say about your doctor's orders… Do the gluten and dairy-free diets help with the IBS? It is actually another hypo symptom. And no sort of fat causes - or worsens - heart disease. Hearts are often affected by under-medicated hypo. And, as far as I know, the salt/blood-pressure connection was debunked years ago. The body needs salt, especially the adrenals. But, your doctor is obviously not up to date with things like that - very few of them are. I really think you should do your own research into these areas, and not just take your doctor's word for everything.
I have no opinions of smoothies. I hate them and wouldn't drink them myself, but I really can't say if they are good for you or not. But, they obviously would be pretty high in sugar. Even so, I doubt that has much to do with your weight.
I really, really think you ought to get full thyroid testing, as SlowDragon says. And, I think you're going to have a shock when you see how under-medicated you really are. You also need new doctors!
First step is to get FULL Thyroid and vitamin testing including FT3
Low FT3 is often linked to fibromyalgia
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
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)
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
thyroiduk.org.uk/tuk/testin...
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
Come back with new post once you get results
If you have Fibromyalgia you'd probably find an improvement if you were prescribed liothyronine (T3) or T4/T3.
If you're in the UK, they have stopped prescribing T3.
Fibromyalgia is probably due to you not being on an optimum dose, and I assume it is levothyroxine. Levothyroxine is T4 alone and has to convert to T3. It is T3 which is the Active Thyroid Hormone and is needed in our millions of T3 receptor cells.
Before blood tests were introduced we were diagnosed upon our clinical symptoms alone then prescribed NDT (natural dessicated thyroid hormones). Big Pharma saw that profits could be made by making levothyroxine. So instead of taking NDT which is made from animals' thyroid glands, so contain all of the hormones we are prescribed levothyroxine which is T4 alone (should convert to sufficient T3 but doesn't for many people).
About ten years after levothyroxine (T4 alone) was introduced 'new diseases' were named, i.e. Fibromyalgia, Chronic Fatique Syndrome and M.E.
I am very sorry you are still very ill and if you can I'd suggest a Full Thyroid Blood Test done by one of the private labs. Usually - if in the UK - doctors only do a TSH and T4 test. A Full Thyroid Function Test is:
TSH, T4, T3, Free T4, Free T3.
thyroiduk.org.uk/tuk/testin...
Blue Horizon or Medichecks do home finger pin-prick tests and make sure you are well hydrated a couple of days before (If you decide to do so). Make sure hands/arms are warm and you're well-hydrated a couple of days before.
Blood tests should be at the earliest possible, fasting (you can drink water) and allow a gap of 24 hours between last dose and test and take afterwards. This helps keep your TSH at its highest as it drops throughout the day.
The following link is by a doctor (decesed) who was also an Adviser to TUK before his accidental death.
naturalthyroidsolutions.com...
web.archive.org/web/2010081...
Yes i'm in the UK - I did try asking for the tests but was refused - I can only get the TSH test which im due in November - I am currently out of work and cannot afford the private tests - (bit of a vicious circle - if i was able to work i could afford them ?) and I live alone. I am saving up though - but tests I have had that were showing irregularities in other things have been ignored by the doctors ? I will post results of the TSH when I get it.
Work on getting vitamins optimal
When you get thyroid blood test always book earliest appointment and get blood draw before eating or drinking anything other than water and last dose Levothyroxine 24 hours prior to blood test
Come back with new post once you get results
Hi, I have just got my results back for bloods and they say I am over medicated - My results were for TSH and read 0.02 (Range 0.4 - 4) so they have reduced my levothyroxine from 125mg to 100 mg.
I have attended a pain clinic information session for the fibromyalgia and I must say it looks pretty acurate for my symptoms, but I have to wait another three months for the next one to be personally assessed.
I have also joined a website called chronometer so that I can track my intake of foods, (includes levels of vitamins and minerals - I can set the required levels and track my nutrition daily - its free to use the basic programme) I just need to refine the levels that I need to help the thyroid ? I am not sure how acurate it is though as not all foods have all the micronutrients listed - I am doing as much research as I can to try and control my diet - Currently my levels read very high in Vitamin A and Vitamin E (all natural food sources) so I am trying to balance everything - I only eat healthy natural foods - no processed, no dairy and no gluten (as advised by doctors) due to medical problems. I will post results of this tracking in a few weeks. I still take vitamin D supplements though as well as all my medications.
Just testing TSH is completely inadequate
Suggest you see GP and insist on testing at least TSH and FT4 plus B12, folate
Ideally testing BEFORE dose is reduced
Ideally you need FT3 tested alongside TSH, FT4
On Levothyroxine many people have very low TSH, but remain under treated with low FT3
Poor conversion of FT4 to FT3 is extremely common
Fibromyalgia is often linked to low FT3
Low TSH on Levothyroxine when under medicated.....common problem
Especially if vitamins are low
Especially if cause of hypothyroidism is due to autoimmune thyroid disease
Especially if gluten intolerant or lactose intolerant
Especially as we get older
Refuse to reduce dose and Request a referral to an endocrinologist
Email Dionne at Thyroid Uk for list of recommended thyroid specialist endocrinologists
thyroiduk.org.uk/tuk/About_...
Recommend private Thyroid test as Christmas present to yourself
medichecks.com/thyroid-func...
10% off test here
thyroiduk.org.uk/tuk/testin...
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)
Links about fibromyalgia
healthrising.org/blog/2019/...
thyroiduk.org/tuk/research/...
thyroiduk.org.uk/tuk/relate...
stopthethyroidmadness.com/f...
prohealth.com/library/new-t...
chriskresser.com/low-t3-syn...
clinicaltrials.gov/ct2/show...
holtorfmed.com/download/chr...
healthrising.org/blog/2019/...
Hi,
I understand the TSH test is inadequate and I know I am better off on the higher dose - my doctor refuses to do these other tests for me - I am trying to change my doctors at present to see if I can get better treatment elsewhere. I cannot afford private tests at the moment but I am saving up for one - I have read a lot about Hypothyroidism and know that the other tests are needed for a proper diagnosis - I will keep you up to date on the move to another doctor, meantime, I will look at the sites you have attached. Thank you
You are only over medicated when the FT3 is over range and yours was not tested . It's impossible to know how much oil is in your car by looking at the petrol gauge 🤔 T3 is the active thyroid hormone needed in every cell of your body. It is LOW in range T3 that causes symptoms- including Fibro. Good levels needed for brain - gut - heart and so on. So it must be tested with the T4.
I was diagnosed with Fibro by a Consultant Rheumatologist in 2000 and with Hashimotos in 2005. Once on optimal medication for thyroid - B12 - Folate - Ferritin and VitD life was so much better.
How much D are you now taking ? Don't forget the co-factors 😊
Hi, - I know that I feel slightly better on the higher dose of levo but my doctor has reduced it again - I don't want my symptoms to get worse again, but they wont test for anything but TSH - Is there anything I can do to convince them otherwise without the tests ?
I am taking 25ug Vitamin D daily as told to by the doctor.
I also have Costochondritis which always gets bad this time of year (had 25yrs +)and I have just found out that this and many other symptoms I have are all part of the Fibromyalgia I have been diagnosed with - I had the B12 deficiency about 4 years ago but after being told to stop taking PPI's it corrected itself apparently. I have asked the doctors for blood tests for cholesterol (I have heart disease) I take statins - I have also asked for B12 and Vit D tests but the doctors will only do the tests they think appropriate which was the TSH ?
Keep reading this Forum and when you can have Private Testing done so the correct tests are carried out. Changing your dose based on the TSH is completely wrong and a recipe for disaster ....
I know that the 125 dose balances out the symptoms, but even with previous test results, the doctors took no notice. The problem is, none of them specialise in this area, they just follow guidelines and guess. Is there anything on here that has convinced a doctor otherwise ? I was thinking of printing off some of the information to give to the doctor to show them what I need, but think they might just take offence ?
Always make sure that ranges are stated after the results. The reason being labs differ in their machines and so ranges might also be different. It makes it easier to respond when ranges are also included.
A year ago your vitamin D was 36nmol
GP should have prescribed 1600iu daily for minimum of 6 months
Local CCG guidelines
clinox.info/clinical-suppor...
Aiming to improve vitamin D by self supplementing to at least 80nmol and around 100nmol may be better .
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Retesting twice yearly via vitamindtest.org.uk
Vitamin D mouth spray by Better You is good as avoids poor gut function.
It's trial and error what dose each person needs.
Frequently with Hashimoto's we need higher dose than average
Government recommends everyone supplement October to April
gov.uk/government/news/phe-...
Vitamin D test £29
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