Hi all, I have suffered with an under active thyroid since the age of 13. Once I started thyroxine the first 3 years I felt much better. Then when I was 15/16 years old my right leg started swelling which was diagnosed as sero negative arthritis. I felt unwell at this stage and I was good at rugby and was going to college on a rugby sports science scholarship. Unfortunately I had to leave due to lack of energy and swelling to my leg. A while after I started feeling much better and lived a normal life till I was 22. Since then my thyroid keeps fluctuating and it’s destroyed me. I was diagnosed with early onset osteoporosis, fibromyalgia, high blood pressure, high cholesterol and suffered mentally as you would expect. I’m on all sorts of medication for the above diseases. I fell very isolated because my speacialists don’t listen or understand. I eat very healthy and I’m still slightly over weight as u would be with this condition. They tell me to eat better but I do and always have I don’t drink alcohol and no fast foods and they look at me as if I’m lying. Has anyone had this experience many thanks
Hypothyroidism : Hi all, I have suffered with an... - Thyroid UK
Hypothyroidism
Please could you share your thyroid blood results and the ranges as they are what will help members give an opinion.
"osteoporosis, fibromyalgia, high blood pressure, high cholesterol and suffered mentally" These are also symptoms of undertreated hypothyroidism. With results we will be able to comment.
My thyroid is never level for long periods of time and then they are. I’ve been told there’s nothing more the nhs can do for me other than treat the illnesses it’s causing me. I don’t have my current blood results as yet. Recently I’ve been taking too much thyroxine and it was dropped back down from 150mcg to 125mg and now I’m back to having the symptoms my next blood test is in two weeks I will put them on in due course. Also my thyroid eye disease has come back and it’s very painful. I feel that I’m being failed by my consultants. 26 years from the age of 13 is long time to have this and feeling very unwell all the time. I have two children luckily because I have testosterone defiance on top.
This sounds similar to what I got, perfectly normal and quite unacceptable treatment that has left me failing now to believe a single word any doctor tells me unless I am able to verify it independently.
I was offered free visits to the local health club when I was unable to even get there without collapsing with fatigue. I was told merely that NDT was "unlicensed" when the GP was UNDER AN INSTRUCTION from the GMC, as every doctor is, to tell patients of any medicine that they believe may help them, even if they cannot prescribe it, I was usually met with silence when I told them I was on the wrong medicine, even when it was TRUE.
My individual funding request for NDT has been refused when the reasons for doing so would be dismissed as utter nonsense by an unbiased judge in a court of law. I am now told by the chair of my local CCG, in the local newspaper, that "Residents with health conditions are urged to 'get active' to help relieve symptoms" - "Aim to do 30 minutes of moderate aerobic activity such as cycling or brisk walking five times a week".
That is precisely what I had been doing before the darned goitre destroyed my life. If I had still been working it would also have cost me my job, perhaps my house and and certainly an enormous amount of money as well.
There must be many thousands of others whose lives have been unnecessarily badly affected by the stupidity and ignorance of the NHS.
Totally agree with you. My fatigue syndrome gets that bad I can’t even lift a bottle of milk and can’t function enough to do things with and for my kids. I’m just told by my gp That they can’t help anymore. Unfortunately hashimotos runs in my family in males which is unusual when women are more likely to get it.
First step is to get copies of your most recent blood test results and ranges
See exactly what has been tested and equally important what hasn’t been tested
For FULL thyroid and vitamin testing you need TSH, FT4 and FT3 plus vitamin D, folate, ferritin and B12 PLUS both TPO and TG Thyroid antibodies
You’re extremely unlikely to get all these tested on NHS
Vast majority of people on here get tested privately via Medichecks or Blue Horizon
Important to get bloods tested as early as possible in morning and before eating or drinking anything apart from water. Last dose of levothyroxine 24 hours prior to test
Come back with new post once you get results and ranges
Reading posts on here you will see being left inadequately treated anc low vitamins as direct result
Likely you have autoimmune thyroid disease (Hashimoto’s) diagnosed by high thyroid antibodies
Low vitamins are EXTREMELY common with Hashimoto’s
Thank you very much for your feedback it’s nice not to feel alone with this disease. I will look into doing the tests you mentioned privately. You’ve been a big help many thanks.
Going by your name, am I right in thinking that you’re Welsh? Can I ask what area you are from lovely?
I know how you feel, I think it’s pretty standard that the care we all seem to be receiving these days is substandard and lacking in many ways!
Early 80s
Yes I’m welsh
Do you still live in Wales? Asking because if you live in a certain area I can advise you of a clinic that has very good specialists. I couldn’t get a referral as I’m ‘out of area’ despite being 10 minutes away!!!
Shelley
Yes still live in wales south east wye Valley area
I’m in the south east too- Cwmbran I live. Wye Valley- is that up past usk towards Ross? Or should I be thinking more toward Caldicot way?
Chepstow
Thought so. You’d probably be told you’re out of area too as it is in Cardiff! Do you currently see an endocrinologist? Is NHH the closest hospital to yourself? Sorry for all the questions just seeing if I can help signpost you in the way of a good endo that’s all. If this isn’t needed then, I understand completely and I’ll wish you well and disappear
Shelley 🐎🦓
Endocrinologist only sees me once a year at the royal gwent which is my closest hospital. I see dr biswas and she seems more interested in my testosterone deficiency rather than worrying about my thyroid which causes the problem.
Low testosterone is hypothyroid symptom too
How much Levothyroxine are you currently taking?
When were vitamin D, folate, ferritin and B12 last tested?
What vitamin supplements do you currently take?
Presumably you have autoimmune thyroid disease also called Hashimotos diagnosed by high thyroid antibodies
Register for online access to your medical records and all historical blood test results and ranges
Essential to test TSH, FT3 and FT4
Come back with new post once you get results
125mcg is a low dose for a man
I’m due my blood tests for vitamins next week. My vitamins 3 months ago were perfect. My thyroid is now in normal range. I’ve seen my Endo 2 weeks ago and she has a shored me that all tsh ft3 and ft4 are absolutely fine. 125mcg is the right amount for me I’m only 5ft 7 and I’m thin. I have just found out from a brain scan that I have a 4mm pituitary adenoma and this is the likely cause of my hormone suppression along with my testosterone deficiency. I do have autoimmune Hashimotos along with rheumatoid arthritis. My cholesterol problem has come from my arthritis I’ve had 24 years almost 2 years after thyroid diagnosis. I’m going to lipid clinic next week as I’ve been tested and I also have hereditary cholesterol disease and high blood pressure. It’s all been confusing because of the fact the thyroid also causes these problems and I’ve been reassured that it’s not my thyroid causing it.
We would ALWAYS recommend getting the actual results and ranges (just to be sure)
You are legally entitled to copies
Most people on levothyroxine need FT4 in top third of range and FT3 at least half way within range
Far too often levels are within range but much much lower than this
I was diagnosed with early onset osteoporosis, fibromyalgia, high blood pressure, high cholesterol and suffered mentally as you would expect. I’m on all sorts of medication for the above diseases.
Lots of questions...
Can you tell us what medications you're taking?
Have you been put on statins for the high cholesterol? I'm guessing you have since you mentioned high cholesterol and medications.
Did you know that high cholesterol is extremely common in hypothyroid people who are under-treated? Back in the 1940s and 1950s (approx) high cholesterol was considered diagnostic for hypothyroidism. In other words, a doctor who found high cholesterol in a patient would treat them for underactive thyroid. (Thyroid function tests hadn't been invented at the time.)
Did you know that statins are not recommended for women under any circumstances, and are only recommended for men who have had a heart attack or stroke. They also have increased side effects in people with hypothyroidism.
You should read this link :
spacedoc.com/articles/50-fa...
It's quite eye-opening.
.
Some people on the forum have managed to get rid of fibromyalgia by optimising their vitamins and minerals. The most important ones for us are iron and ferritin (iron stores), vitamin B12, folate and vitamin D.
.
High blood pressure is a symptom of under-treated hypothyroidism.
stopthethyroidmadness.com/b...
.
What do you take for osteoporosis? I'm not knowledgeable on osteoporosis and its treatment, I've just picked up the odd snippet of info here and there. Are you taking magnesium? And what about boron? Are you taking calcium? It is not a good idea to take calcium unless you've had a test and it shows your calcium is low or under the range. And if your vitamin D is low and you supplement it will improve your absorption of calcium from your diet without taking calcium supplements.
.
Your mention of your thyroid fluctuating all the time suggests that you probably have Hashimoto's Thyroiditis (known in the UK as autoimmune thyroid disease). This shows up in blood testing with high thyroid antibodies. 90% of hypothyroidism in the UK is caused by autoimmune thyroid disease.
There are ways and means of calming down the overactivity of the immune system - but it doesn't work for everyone. If you read the Izabella Wentz website :
and search for info on gluten some people can reduce their antibodies by eliminating gluten from the diet.
.
It sounds to me as if your doctors have not been up to the job of treating your hypothyroidism very well - and that is true for practically everyone who comes here. There are ways and means of improving our health despite having thyroid disease. It can be confusing and a hard slog, but it is worth the effort if you want to have a life. And you can get lots of help from this forum.
Hi thanks for your reply. I take
125mcg of thyroxine
20mg Pravastatin
Etoricoxib 30mg for arthritis
Ramipril 5mg
Amitriptyline 75mg
Paroxetine 40mg
Butec buprenorphine patches
Testosterone gel
The side effects are terrible at times. Because I’ve been on these for so long I can’t stop them. I’ve tried to but withdrawal symptoms are awful. I would imagine all this is most probably not helping my thyroid meds beacause of drug interaction. Unfortunately I’ve been pushed on these meds by speaclists.
Wow. Your doctors really haven't done you any favours, have they? Instead of trying to understand why you have particular problems they have just bunged you on another pill. I understand why you can't stop several of them, at least not quickly or easily.
Please, as a first step, get hold of a copy of your blood test results, for the last 2 or 3 years. You are entitled to them by law, and you can't be charged for them. Nor are you obliged to give a reason for wanting them, but staff in surgeries can never resist asking anyway. If they do ask just say something like "I've decided to take an interest in my health", or something else equally innocuous.
The best way to get a copy is to ask the receptionists, NOT a doctor. Apart from anything else it would be a waste of an appointment. Don't ask when the staff are particularly busy, it tends to annoy them. Some staff will do it immediately, others make you come back the next day. Don't lose your temper with them, however obstructive they are. Every time you ask for a copy of information from your medical records you should take proof of identity with you.
Don't accept verbal or handwritten results. You have to get results that come from your medical records at the press of a button. Another thing that you must not accept is a list of test names with the word "Normal" printed next to them. You need both the results and the reference ranges.
Once you have some recent blood test results create a new post, copy in your test results including the reference ranges, and ask for feedback.
If you are refused a copy of your blood test results come back here and let us know. There is another option open to you - making a Subject Access Request. It's easy to do this, by the way, so don't worry about it if you have to do this. Just ask for advice on here.
...
As regards reducing your pill load and your side effects, about 50% of the people put on statins each year give them up because of side effects. So you wouldn't stand out in a crowd by doing so. And I am not aware of coming off statins having any withdrawal effects.
Don't just take my word for it though. I'm not a doctor, I'm just a random stranger on the internet. Always do as much of your own research as you can. Do some searches for information on statins from Aseem Malhotra (an NHS cardiologist) and Malcolm Kendrick (an NHS GP with a special interest in heart disease and cholesterol).
...
Regarding coming off anti-depressants I'm not knowledgeable on how to do this safely, nor do I know under what circumstances it is a good idea (or if it is a good idea). It would be worth joining this forum and doing some reading on the subject so you know what you are doing, and you could ask for help on there from people going through it :
Were you aware that you take two different anti-depressants? Both Paroxetine (also known as Seroxat) and Amitriptyline are anti-depressants. Amitriptyline is also often used to reduce pain which may be why you were prescribed it. However, your dose of 75mg is an anti-depressant dose. A dose for dealing with neuropathic pain is usually about 25mg or less.
bnf.nice.org.uk/drug/amitri...
en.wikipedia.org/wiki/Amitr...
One thing I would suggest is that you optimise your thyroid levels and your nutrients before you even consider coming off the Amitriptyline and/or Paroxetine.
...
Many people with underactive thyroid become severely depressed. In some cases it is because their thyroid hormone levels are wrong or they are being treated with thyroid hormones of the wrong type. But the NHS only "believes" in one treatment, and that is Levo which makes life difficult.
Another cause of depression in people with hypothyroidism is that they can't absorb nutrients very well. This is something that patients can deal with themselves - but only if they know what levels they need to improve.
Just as an example - I don't absorb iron very well, and so I take an iron supplement to maintain my levels as near to optimal as I can. Since I've been doing this my anxiety has disappeared, and my depression has diminished a lot.
...
Good luck. 
I am vitamin d and c deficient which I take supplements for since going on them I’ve managed to drop down from 60mg of paroxetine to 20mg. My amitriptyline is at 75mg because I have peripheral neuropathy which the amitriptyline really helps to reduce the pain. I’ve had two nervous breakdowns in the last 12 years. I will get those results from my surgery. Thank you so much for your reply it means a lot to me.
How is your B12 level ? A result under 500 can result in neurological damage - which peripheral neuropathy can be ... Docs forget the building blocks of our health and reach for the prescription pad instead ... they know so little about vitamins and minerals. How much VitD are you taking at what was your last result ? Time to take control if you can ...
My b12 has been perfect all the years I’ve had my under active thyroid. My vitamin d is now normal range for about 2 years. They are saying to me that the low testosterone is likely to be the cause of the neuropathy. Since the age of 27 I’ve had low testosterone so I’ve had it 9 years since diagnosis but I know I’ve had it much longer than that before diagnosis but I just thought the symptoms was just normal fatigue and lethargy. They tell me the meds they put me on from such a young age to deal with all my symptoms have caused the testosterone problem. But I know it’s to do with my pituitary and thyroid cause I have micro adenoma to the pituitary gland but they say it’s not the issue.
So glad your B12 is over 500 and your VitD over 100 .. do you have printed copies of your results ?
My doctor shows me them on his computer screen.
So do you remember the actual results or does your GP say they are perfect ? From experience reading here when a GP says fine/normal/OK - they mean in range. It is where you are in the range that is the key to wellness and the good workings of your thyroid meds. Always obtain printed copies of all results so you can monitor your own progress and check what has been missed ... Your drug list scares me slightly ... check out the video on YouTube - Polypharmacy - done to a Queen song ..
I will ask my surgery for a copy of my results. My drug list scares me too. I’m told to do more exercise which on some days my fatigue is that bad I can’t get up and function. All I get told is if I wasn’t on all the meds I wouldn’t function. I’ve asked for a second opinion recently and that puts me on a waiting list for I don’t know how long. I feel sorry for my very young children and my wife. I can’t work so I can’t bring any money in for my children to have holidays they deserve. My wife works part time and is my care. When I had no choice but to stop working we lost our family home and now live in social housing. I just wish there was a quick remedy to turn my life around health wise.
Welcome to our forum and I'm sure you will get lots of support from our members.
What a pity you were 13 years old when first diagnosed and it would have had an effect upon you, as you were too young to understand what was happening to your body.
You will have to read, learn and ask questions on the forum. We are on this forum due to our own experiences of not recovering -when given any other prescription for any other symptoms asdoctors are unaware of any symptoms whatsoever. Symptoms are and I am sure you will tick off yours too:-
thyroiduk.org.uk/tuk/about_...
Most doctors are ignorant about clinical symptoms nowadays and only look at the patient's TSH result and adjust dose up.down willy/nilly and it is difficult to feel better. Due to them not knowing very much, we are usually given 'other names' for the symptoms we have developed, i.e. "osteoporosis, fibromyalgia, high blood pressure, high cholesterol and mental problems ".
What you need is Free T4 and Free T3. Ask if your doctor will add these into your next blood test. If not you might have to get them yourself. T4 (levothyroxine) is an inactive hormone and it is supposed to convert into T3 which is the active hormone and we have millions of T3 receptor cells and all of them need T3 in them.
The brain and heart have the most T3 receptor cells. Without sufficient T3 our body cannot function as normal.
articles.mercola.com/sites/...
If you read the above link, you will know more than many experts.
You will also be able to tick of some of your symptoms in the above link i.e. signs/symptoms.
Blood tests for thyroid have to be at the very earliest, fasting (you can drink water) and wait an hour before eating. Food/coffee can affect the uptake of the hormones so leave about one hour between last dose of hormones and the test and take it afterwards.
thyroiduk.org.uk/tuk/relate...
We can recover our health and members are very helpful at responding as we've been in the same boat, i.e. not recovering or improving our thyroid hormones).
You might like to listen to the following from Dr Lowe, as I've just seen a copy on TUK it is re fibromyalgia:-
Thank you very much for your advice and information. Do anything to feel better than I am at the moment.
Hypothyroidism and me!?
Hypothyroidism and weight gain during and post menopause.
Breathlessness and Hypothyroidism?
Hypothyroidism??
Newbie!! Never seen a doctor for my Hypothyroidism.
