Log in
Thyroid UK
93,488 members107,546 posts

Help with diagnosing Hypothyroidism please.

Hi Everyone,

I really need some help please as I think my GP is not being very helpful. I had a private blood test done for my Thyroid 2 weeks ago which showed my Peroxidase antibodies were over range My TSH was 5.46 over their range and Free Thyroxine was below range. I thought this would be enough for a diagnosis. I went to the GP with these results and she said she would need to repeat all these tests.

I had the blood test last week with the but the GP only did 3 basic tests. These are the results of their one:

Thyroid function test

Serum TSH level 2.69 mu/L [0.35 - 4.94]

Serum free T4 level 15.6 pmol/L [9.0 - 19.0]

Thyroid autoantibody level

Serum thyroid peroxidase antibody concentration 441.00 iu/mL [< 5.61]

Above high reference limit

The GP has told me on the phone that the above results are all normal and they will repeat my test in 6 months time. She said my antibodies being raised just means I am at higher risk for the future.

Can people please advise on what I should do next I don't want to wait for 6 months of feeling really ill. This GP surgery has referred me to an Endocrinologist the referral went out in July. I don't know how long this appointment will take. I really need to know what to do now because I probably won't be able to afford another private blood test again. I really feel this GP is not listening and just argues with everything I say. Can someone please advise on what would be my next steps to take with getting my Thyroid sorted.

I look forward to any replies. Thanks

23 Replies
oldestnewest

Sadly many of us have experienced the same. Your Dr is told to wait until the TSH is above 10 to diagnose hypothyroidism. Many people never get to 10 mainly because it's a rubbish unreliable blood test.

Do you have any close family members with thyroid disease ?

Have you had your ferritin, B12, folate, vitamin d tested? They all need to be in the top part of the lab range. This would be a good start as deficiencies in any of these cause similar symptoms to thyroid ones.

Read as much information as you can sonthat you have the knowledge. Sadly Endocrinologists tend to just look at TSH too!

2 likes
Reply

You have Hashimoto's. Although the antibody levels are high thyroid functions are completely normal. High antibody levels shouldn't really give symptoms. Your GP has to test you for vitamin deficiencies and other basic things further. I have read NICE guidelines all the UK doctors are recommend to follow. NICE guidelines recommend thyroxine if TSH goes >4 with hypothyroid symptoms.

cks.nice.org.uk/hypothyroidism

2 likes
Reply

Rapid1 Unfortunately the link says "Mild TSH elevation (4.0–7.0 mU/L) may be a normal physiological adaption to ageing."

My hubby, 65 & with loads of symptoms, has just found his TSH is now 6.5 (range 0.55 - 4.80). :(

Reply

Hi Sue,

I will post my private test below.

Thyroid peroxidase antibody level 184 iu/mL

0.00-115.00

Thyroglobulin Antibody 80.90 0.00- 115.00

Serum free T4 level 11.5 pmol/L 12.00-22.00

Serum TSH level 5.46 miu/L 0.27-4.20

total thyroxine 62.2 nmol 59.00-154.00

free t3 4.44 pmol 3.10 - 6.80

Serum vitamin B12 level 371 ng/L 140.00-724.00

Serum ferritin level 46.6 ng/ml 13.00-150.00

Serum vitamin D level 121 nmol/L 50.00-200.00

Serum folate level 6.38 ng/ml 2.91-50.00

I've had iron deficiency anaemia since March. I've now stopped taking any iron tablets. My Vitamin D is raised now because I've been taking supplements for that too.

I just want to know do all these results mean I have Hypothyroidism and what can I do about it now when this GP is not being helpful. I'm getting very stressed with the whole thing. Please help with suggestions on what I can do next. Thanks.

Reply

So glad you've already got your vit/mineral results, that helps a lot! :) Yes you are hypothyroid as shown by your high TSH, your T4 is very low, too - that's the inactive form of the hormone that your body makes as a storage form, if it's low, it shows your thyroid is really struggling.

Your B12 is too low as well, although your doctor will tell you it's fine. Really it needs to be in the upper quarter of that range. You can help yourself by getting sub-lingual B12 tablets (place beneath the tongue and allow to dissolve) - 5,000 mcg starting dose is good to bring up the level.

Ferritin is on the low side as well, your body can't convert T4 to the active T3 hormone when it's too low. Best source of iron is liver or leafy green veg.

Folate is low too, you can supplement that in a multi-vit such as Jarrow's B-right.

Wouldn't hurt for your Vit D to go a bit higher.

I must add I'm not medically-qualified. Am sure others will be along shortly to give you more detailed advice. :)

1 like
Reply

The best possible thing that you can do for your iron levels is to take a good quality vitamin c, you need to take a large amount up to vowel tolerance.

1 like
Reply

As I say doctor's and Endocrinologists wait to see the number 10 - although in Germany and USA it's when TSH is 3!

It took me 5 years to get well from your starting point, we are all different but diet is a massive thing!

Have a look at Dr Sarah Myhill's latest YouTube videos and her website.

Also Dr Amy Myers and Izabella Wentz

If you start with diet and taking vitamin d3 with k2, a sublingual B12 like Jarrows, and vitamin c!!!

Whereabouts in the country are you?

Do you have a good independent health food shop nearby?

Sue

1 like
Reply

How can your doctor say 'normal results' when you have such high antibodies?? You have Hashimoto's unfortunately. The best you can do for now to help your body is to find out your Vit D, B12, folate and ferritin levels, and also if you can manage it, change to gluten-free as this often helps reduce antibodies. Once you are prescribed Levothyroxine, as I hope you will be, having optimal levels of those nutrients (at the very least) will help your body to make best use of the Levo.

I'm afraid this is a long road and as you'll quickly find out, you'll need to do a fair bit of research for yourself (difficult I know when feeling poorly). Any questions, just pop on this forum and ask, so many very well-informed people here! :)

First port of call: thyroiduk.org/index.html

Read up as much as you can in the 'about the thyroid' section, especially that regarding Hashimoto's and Hypothyroidism.

1 like
Reply

Thank you all for your help so far. So do I have to wait for this Endocrinologist appointment to try and get a diagnosis and get some treatment or would there be anything else I could do in the meantime. I will be reading all about it in the meantime and thank you for those helpful links. This GP doesn't seem to know anything about the Thyroid and they keep arguing with me everytime I go back there. Do those results really mean I have Hypothyroidism. My family history is my brother has autoimmune conditions too he has Psoriasis. I have developed Vitiligo in the last few months. No-one in the immediate family has been diagnosed with Thyroid problems but they may have them and not know I suppose.

In the Nice guidelines would I be the overt or subclinical Hypothyroidism. Thank you all for such helpful replies.

Reply

Yes I'm afraid you really do have hypothyroidism - if auto-immune diseases are in your family it's even more likely you'll get one, and once you have one, the likelihood of getting another increases. You also need to know that the UK has one of the highest upper limits to the 'normal' TSH range. Other countries have a lower upper limit, and it that case you would be immediately diagnosed. The UK is... ridiculous, really, and some doctors will only treat you once you have a TSH of over 10! Which would mean you'd feel really, really ill. I was fortunate in that my GP agreed to treat me with a TSH of 4.95, just over range.

I've never been to an Endo but from what's said on this forum, they are a mixed bunch as well, some are very good and helpful, others are pretty useless, I hope in your case you get the former.

1 like
Reply

You are hypothyroid but doctor's are told wait until TSH is 10!

Please don't build your hopes up with Endo as he/she will say the same! I have seen 4 of them and think a car mechanic would have known more! Two of them were professors !

I am guessing that you have a long list of symptoms!

Vitiligo was your first autoimmune disease, hypothyroidism is your second.

Please read Dr Any Myers the autoimmune solution - you can do something now - you don't have to rely on doctors

1 like
Reply

Were both these tests done at the same time of day, and fasting? TSH is highest early in the morning, and drops throughout the day. It also drops after eating. So, it's always recommended to have an early morning test - at least before 9 am - and fast over-night. I know that can be difficult with the NHS, but it's worth sticking out for, because it can mean the difference between getting diagnosed and not getting diagnosed. :(

1 like
Reply

Was your blood test with GP at the very earliest possible time, and fasting (you can drink water).

You have an Autoimmune Thyroid Disease called Hashimoto's due to your high antibodies. If you email louise.roberts@thyroiduk.org.uk and ask for a copy of the Pulse Online Article by Dr Toft and highlight the part where he says if antibodies are present we should be prescribed levothyroxine. He was ex President of the British Thyroid Association.

Your doctor probably thinks she should wait until your TSH is 10 when in fact she could do so when it is slightly above the top of your range (4.94). In other countries if TSH if 3 they prescribe levothyroxine.

thyroiduk.org.uk/tuk/about_...

1 like
Reply

Hi,

Yes both tests were done fairly early around 9am and fasting. I was just recently prescribed Provera and I had taken some of them in between my private test and the NHS one. Not sure if that might have made the TSH level drop.

I have received a copy of the Pulse Article and read it myself but this GP practice is just so rude to me everytime I go in there. They are just dismissing everything I say. I do need an NHS diagnosis as I can't afford to treat this myself as I'm not working.

I'm in the UK in South Yorkshire and have been referred to an Endocrinologist at Sheffield hospital would anybody know of any good doctors there please. I don't know if I am allowed to specify which doctor I see.

My B12 needs to be tested too so I have stopped taking any supplements since March so I can try to get a diagnosis for that. I also have a neurology appointment next month.

This GP even told me she would be sending me to the Endocrinologist everytime I need a change in medication etc. I just need to know how can I get a diagnosis now that this GP has refused to treat me or diagnose me.

Thank you for all your helpful replies so far.

Reply

You would be best to start a new post when asking for recommendations. Your question about endos in Sheffield will not get noticed at the bottom of this one.

Ask for recommendations to be sent to you by private message, because we can't discuss how good or bad doctors are publicly.

1 like
Reply

This GP even told me she would be sending me to the Endocrinologist everytime I need a change in medication etc. I just need to know how can I get a diagnosis now that this GP has refused to treat me or diagnose me.

You really need a new doctor very urgently.

The doctor who is afraid to change your medication without the approval of an endocrinologist is utterly, utterly useless. And since it takes months (or possibly even years with the NHS being kept so short of cash and staff) to get an appointment, at the rate you are going you won't get the correct level of meds until 2050.

No wonder the NHS is struggling for cash. The money and staff shortage is being made worse by idiots like your GP.

2 likes
Reply

Hi Humanbean,

I will do a new post about the doctors in Sheffield. I have realised for quite a while my GP surgery don't seem to be doing the best for me. I'm not sure if it would be worth seeing another GP in the same surgery or changing surgeries altogether. I've so far seen 2 GP's at the one I'm with now. The first one said there was nothing wrong with my Thyroid and to come back and see him if my hair started falling out or I put on more weight. Now this other GP has said this to me. Could you please advise how I could find a better GP that also understands Thyroid issues. I am feeling so ill and stressed and feel like I am just dragging myself through each day.

Reply

I'm afraid I couldn't make a guess whether or not you will find a better doctor in your practice or at a different practice, and I don't know a way of finding out unless you can ask locally for recommendations from your friends and neighbours. Otherwise the process is trial and error. I gave up on getting doctors to treat my thyroid properly several years ago, and now treat myself. I also do my own thyroid tests and buy my own supplements.

It is possible to get blood tests done privately without a doctor's permission, as you obviously know. It was when I found that out that I decided to treat myself.

Various kinds of thyroid meds can be bought online - there are three different kinds - Levothyroxine (T4), Liothyronine (T3), and Natural Dessicated Thyroid (also called prescription dessicated thyroid).

It is worth your while to learn about the thyroid and how it works. The first book I bought that I still dip into now and then is this one, and I've never regretted buying it :

amazon.co.uk/Your-Thyroid-H...

---

Regarding your vitamins and minerals :

Serum vitamin B12 level 371 ng/L 140.00-724.00

Serum ferritin level 46.6 ng/ml 13.00-150.00

Serum vitamin D level 121 nmol/L 50.00-200.00

Serum folate level 6.38 ng/ml 2.91-50.00

Can I suggest that you read the advice that SeasideSusie posts on vitamin and mineral results - what to buy etc...

healthunlocked.com/user/sea...

I would suggest that you need to get your B12 higher - up to at least 500, and possibly up to about 1000 (it isn't poisonous).

Your ferritin needs to be raised to a minimum of 70, and would be better still at 80 - 100 i.e. mid-range or a little bit higher. The iron supplements prescribed by doctors in the UK can be bought in pharmacies without a prescription. It is up to the pharmacist whether they sell or not. If you are refused by one pharmacy try another. I always got mine from Tesco pharmacies or Lloyds.

Your vitamin D is fine, but you need to keep it at that level. To maintain your level rather than raise it you should drop the dose of your supplement - either take a lower dose or take your existing dose on fewer days of the week.

There are co-factors that need to be taken with vitamin D - magnesium and vitamin K2. See SeasideSusie's replies for info on this.

Your folate needs to be higher. I would suggest raising it to mid-range or the upper half of the range.

1 like
Reply

Thank you so much for your reply human bean and everyone that has replied above. It is really good to have the support of people who know what they are talking about. I might have to look for a different GP surgery I think as the one I'm with doesn't seem so good. I've only moved to this area last year and this is already the 2nd GP surgery I've tried in this town. Think I'll have to try and find a better one.

I'll buy the book you have recommended and start educating myself thanks. It's very helpful you telling me the different forms of medication and that is an option for me too if going through the NHS doesn't work.

Thank you Seaside Susie for your link about the vitamins. I have already bought some folate so I will start taking that.

I was thinking of phoning the Endocrinology department of the hospital I have been referred to and trying to get an urgent appointment but not sure if that would work. Would this department be the one that might do all the vitamin checks that I need. I think I must have an absorption problem.

I will start reading all the links above, and buy the book. Feeling less stressed now thanks to you all.

Reply

Regarding the different forms of medication that can be used to treat hypothyroidism I forgot to mention that it is fairly common for people to take a combination of 2 out of the 3.

Common combos would be reducing the dose of Levo and making up the difference with T3. Note that T3 is 3 - 4 times as potent as Levo. So, someone who reduced their dose of Levo by 60mcg would replace that with 20mcg T3.

If people try NDT and feel that something still isn't quite right, they might try NDT + Levo or NDT + T3. Blood tests would be essential for determining what things to try.

With regard to your results, at the moment you seem to be under-medicated and just need more Levo. But knowing your Free T3 is really essential to knowing which direction you should be going, if adequate Levo doesn't help.

Anyone who wants to or has to become wholly independent of their doctor, if they can't find a helpful one, will usually opt for NDT first. Going for T3 only would be a last resort, and it doesn't suit that many people.

Regarding blood tests, this link is very useful :

thyroiduk.org.uk/tuk/testin...

For getting thyroid function tests done privately, plus basic minerals and vitamins, these are a good place to start - there are several ways of collecting blood - finger-prick kits are very popular. Other blood collection methods usually cost extra money, unless you know someone who will take blood for you :

bluehorizonmedicals.co.uk/t...

bluehorizonmedicals.co.uk/a...

bluehorizonmedicals.co.uk/s...

---

medichecks.com/thyroid-func...

medichecks.com/how-it-works

---

For both companies there are cheaper/more expensive options than those I've given above, with fewer or more tests included.

Both Blue Horizon Medicals and Medichecks have fairly regular special offers. Register with both sites to receive info on special offers via email.

Once you have any results you can copy them into a new post on the forum and ask for feedback.

1 like
Reply

Thanks very much for your reply Humanbean. The problem I am having now is that I have already had a private blood test with Medichecks. I had the Thyroid Check Ultravit done and those results show that I have an underactive Thyroid. I went to the GP last week and she wanted a repeat blood test done she only checked my TSH, free T4 and the thyroid peroxidase antibodies which are over the range. My TSH had dropped back down to 2.69 [0.35-4.94] . She is now telling me I don't have a Thyroid condition and has given me no medication for my Thyroid.

I'm not sure what to do next. I do really need to try and get treated by the NHS as I'm not really able to work. Would you have any more suggestions of what I could do now please?

Reply

Sorry I get muddled up with all the posts I answer, and I forgot you weren't being treated.

Since you want to spend as little money as possible, you will have to try and maximise your health as cheaply as possible.

If you eat meat, you could buy liver a couple of times a week. That will improve your iron and ferritin, and its cheap. I think kidneys and heart are full of nutrients too if you can bear to eat them.

Your vitamin D is good now, so reduce your dose of your supplements. As I think I mentioned, you can lower dose and take the lower dose every day, or stick to a higher dose and take it fewer times a week. Obviously the higher dose, fewer times a week, is cheaper than taking it every day.

Folate - look up lists of folate-rich foods on the web and incorporate them in your diet.

Vitamin B12 is going to come from liver, as well as iron.

Your antibodies... Buy selenium supplements, you should take 200mcg per day. They help to lower antibodies. For more (free) information on controlling Hashi's look up Izabella Wentz. She has a website, a facebook page, and has appeared on several Youtube videos.

She has also published two books, one of which is available in a Kindle edition, which is obviously cheaper than the paper book. You don't have to have a Kindle to read Kindle books. There is an App you can download from Amazon to read Kindle books and the App is free.

If you want to buy some NDT, which is a good thing to start with if you are self-medicating, you could ask in a new post where to source it. Since means of payment are always a problem with buying any form of meds online, you should always double check via email before ordering which options are available to you. I've heard of people putting in their credit card details, then being told that the only options available are X, Y or Z. I always think that is very dodgy.

Reply

Thank you very much for your great reply. I do have a kindle so have already downloaded the helpful book you recommended above. Thanks also for the helpful information about the Vitamin D. I have already bought some of them so I will take them 3 times a week. I will buy the Selenium tablets too.

I would prefer to exhaust every possible option before I start buying the Thyroid medication myself as I'm easily confused these days. I really would like to get a diagnosis on the NHS. I don't know if it is worth me phoning the Endocrinology department at the hospital myself and trying to get an urgent appointment. I will try and find a new GP too I think.

I think I would feel less stressed if I had some plan of action. Sorry if I'm being a pain. I'm finding it hard to think straight.. Thank you so much for all the useful information above I'm very grateful.

Reply

You may also like...