I had a partial thyroidectomy two years ago due to a goitre. Since then I never felt I recovered from the surgery. I've been diagnosed with CFS (chronic fatigue syndrome), after the GP trying to fob me off with anti depressants initatially, then to diagnose me with fibro and eventually referring me to CFS. My TSH levels are 1.38 and I have been unable to get the gp to do T4 T3 tests. I have so many symptoms that indicate hypothyroidism, Inc low folate levels and iron etc. The gp has been Incredibly condescending with response to me suggesting I believe it is my thyroid. Honestly I'm at my wits end with what I'm supposed to say to them in order to get the support I think I need. Any advice welcome.
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MindyMil
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Probably the first thing to do is make sure you have copies of your tests and results, including reference intervals (ranges).
If you do have them, post and people will make suggestions.
If you know you are low in folate, get some supplements. But it is always advisable to check B12 before starting any folate/folic acid supplementation. Many advise methylfolate rather than folic acid - but the need for this varies.
For long term supplementation, up to 400 micrograms a day seems safe and well-tolerated.
If you had a general anaesthetic which including nitrous oxide, which is fairly common but not universal, that could have severely impact your B12 levels.
If your iron levels are low, you need to do something. Dietary changes are often a good approach - such as consuming more liver, red meat, etc. We can often tolerate such forms better than tablet-type supplements. But as soon as you start, have a plan of getting re-tested. Excess iron can be worse than deficiency.
You very much need sufficient iron on order to handle thyroid hormone well.
Thanks for your response! I have been given a prescription for folic acid from the GP. I'm waiting to speak to gp today and ask for a referral to the endocronologist.
Be aware that high dose (typically 5 milligrams) is only expected to be used for a short time - two or three months - in order to raise folate levels quickly.
All too many have been left taking that for many months or years - and have suffered all sorts of unpleasant symptoms. Taking excess folic acid is to be avoided.
On the other hand, you might well find you need to take, say, 400 micrograms a day indefinitely in order to maintain folate levels.
My TSH levels are 1.38 and I have been unable to get the gp to do T4 T3 tests.
I would suggest that you do your own test. The NHS hospital at Exeter offers a home fingerprick test to the public which tests TSH, FT4 and FT3, costs £26.10 with code from ThyroidUK here:
If thre is anything untoward with your results then it will be difficult for your GP to dismiss the test as it's done by an NHS hospital.
If you want a full thyroid/vitamin panel then look at Medichecks Advanced Thyroid Function or Blue Horizon Thyroid Premium Gold, either of these tests give a fuller overall picture, those private labs may not be acceptable to your GP but it's a starting point for your GP to investigate further.
First thing is, do you have any blood test results from GP other than just TSH
Presumably you had testing before and after hemi thyroidectomy
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone 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.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
Low vitamin levels tend to lower TSH
Low vitamin levels common as we get older too
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
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Ord’s is autoimmune without goitre.
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue too
Hi there, I had partial thyroidectomy (7/8ths removed) over30 years ago and had been told before my operation that the GP would issue scripts for Levothyroxine. This didn't happen for nearly 2 years, I kept going backwards and forwards to the Drs but they kept telling me everything was fine when I was on my knees with fatigue, hair was falling out etc... and I had a young son of 15 months to look after. I actually called my sons health visitor who we had seen numerous times for check ups , she came to the house, took one look at me and got onto the GP - low and behold my first Levo script was provided, only 25mcg but a start. Please don't be fobbed off, as others on the forum have suggested, have a full thyroid blood test and come back and post results. This forum is a mine of information and advice, I personally don't know where I'd be without it.
If you copy/paste the above information of your first post into your own Page so that, in future, you don't have to repeat your history.
If you want to bring a post to the attention of a member put an asterix before their name which will then turn blue MindyMil .
I had the same condition, partial thyroidectomy for goitre (benign thankfully), remainder of thyroid refusing to work, no help from doctor for months. Then a miracle!GP suggested I take Orovite pills, concentrated B and C vitamins.
Very rarely do you get a sensible suggestion from GP re the thyroid, but this was indeed fantastic.
Within a couple of days I felt absolutely marvellous. This condition lasted about a week, then I returned to normal good health.
Quite the opposite of what happened after my total thyroidectomy some 15 years later when I felt equally as marvellous after the operation until some weeks later when the effects of taking the WRONG medicine, Levothyroxine, started to emerge slowly until I moved to NDT.
Obtainable on the net but if no improvement after 2 weeks, Then pointless continuing.
I think you best option is to pay privately to get the appropriate blood tests actioned and then post the results and ranges back up on here, in a new post, let forum members advise, and then make an appointment to see your doctor with some research and back up suggestions from forum members.
It is essential that you are dosed and monitored on your T3 and T4 blood test results and not a TSH - though in primary care a TSH blood test is likely all that is run.
There are a list of companies on the Thyroid UK website which is the charity who supports this amazing forum, and some even offer a nurse home visit to draw your blood and would suggest in the first instance ordering a TSH, T3, T4 antibodies, inflammation, and ferritin, folate, B12 and vitamin D blood draw, best taken first thing in the morning, having fasted over night, and having stopped any supplements for around the previous 7 days so we can see exactly what your body is holing onto.
When unwell with hypothyroidism it can be very difficult to even question your medical treatment, although you know you are not wrong as you are living with the symptoms, and reading and understanding medical jargon and the blood tests a step too far.
The thyroid is a major gland, the body's engine/gear box and responsible for full body synchronisation including your physical, mental, emotional, psychological and spiritual well being.
A fully functioning working thyroid would be supporting you daily with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg. so whatever thyroid you have left, it is working in overdrive to try and compensate, and even if you just stand still and do nothing, you will be exhausted as the thyroid gland runs the whole body's metabolism.
So, you imagine if you were a car, with a " dodgy gear box " I very much doubt you 'ld be happy driving around not knowing how long you can last out without calling the garage to sort out the problem.
The fact that you have had a partial thyroidectomy means that your remaining gland is trying to compensate and it's simply logical that you need additional support in the form of thyroid hormone replacement.
I have Graves Disease and had RAI ablation for my thyroid back in 2005 and immediately prescribed T4 - Levothyroxine thyroid hormone replacement.
I seemed fine for around 6/7 years but then found myself in an ever decreasing circle of wellness and found myself looking for answers as I was dismissed by my doctor as being a conundrum.
Sadly it seems that with thyroid health, we do need to become our own best advocates in order to " get well " again, and suggest you start reading up on here, and on the Thyroid UK website where there is a vast amount of information.
If suffering with the awful brain fog, you'll feel nothing is registering, but trust me, it does, so just go one step at a time, and first and foremost, get the blood test organised, so we help you better understand your next best step back to better health.
I had partial thyroidectomy in 2006 & I only got Levo prescribed last year after being diagnosed with Hashis. I got really ill with frozen shoulders/pain everywhere & feeling life was too much. I really do have a lot of health problems which I know are all attributed to being hypo. I did buy thyroid S & self medicated when I couldn't go on like this any longer, the thyroid S changed my world around, but I wanted GP to understand I was hypo. in case I had trouble sourcing it. I saw so many different doctors & they all talked down to me & implied I was depressed/stupid to even consider I was hypo. After all, "the other half of the gland will make up for what has been taken away" Aargh!!! I had reason to visit my surgeon recently & she asked what medication I was on & I replied that I'd just been started on Levo. & she wanted to know why I hadn't been on it since the operation. Very good question! I wish you all the luck in the world & hope you get treated soon, as life is not good living with a catalogue of health problems.
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