Hi everyone, I’m having issues with my GP. I’ve been feeling very fatigued, constantly gaining weight and experiencing ‘brain fog’ which isn’t like me at all. This has been going on over a year now. 6 months ago my TSH tests came back at 2.8 but since then my symptoms got worse and I begged the GP to do another test which shows my TSH now at 4.5 and my T4 at 14. My GP refuses to treat me even though I have explained that my husband and I have been trying to get pregnant for 3 years and are on the waiting list to see the fertility specialist again (written off for 6 months to try and control my BMI) the consultant and the GP are not concerned even though I’ve shown them the NICE guidelines and articles I’ve found on the thyroid associations website. Can anyone recommend anything else I can do to get treated? I live in just outside of Lincoln UK and am willing to see someone private if i have to. I also have AXA PPP through my work but have to be referred and the GP is refusing! Any help would be appreciated.
Subclinical Hypothyroid and the GP won’t help! - Thyroid UK
Subclinical Hypothyroid and the GP won’t help!
Sorry to hear your feeling poorly. Unfortunately they changed the guidelines a few years raising the TSH threshold from 4.8 to over10 before being willing to treat for hypothyroidism. Your TSH looks like its increasing quite rapidly. Has your GP agreed to recheck your level in three months? I felt terrible when my TSH was over four so you have all my sympathy.
You could see someone privately but in all likelehood your GP would need to refer you. If your paying you may find your GP is willing to do so as it wont cost them. I suggest you contact Louise Warvill as Thyroid UK have lists of doctors who are thyroid friendly.
Thank you waveylines, its horrible feeling so rough but nice to know there are people out there. My main gripe with the GP is that the NICE guidelines along with the British thyroid foundation all agree that your TSH levels should be under 2.5 when trying to conceive, and in the first trimester it should be ideally under 2. It does state in the NICE article in 2016 they should consider treating anyone over the TSH of 4.0 with T4 treatments if they are actively trying to conceive or pass onto an endo . My GP’s answer was well the NHS don’t HAVE to treat you until it gets above 5 before then it’s doctors opinion. It’s so frustrating.
Is it possible to see another gp? Within my surgery the gp’s have different opinions
Yes very frustrating. I really feel for you. I remember it well for myself when my TSH was 4.6 I was off work as I was sooooo ill. Like that for two years before they prescribed as I went to a private doc.
Am afraid NICE & BTF are all guidelines or recommendations so they dont have to. Even if it would be better practise to do so. Historically some doctors have been prosecuted by the GMC for doing do so. It has made all practioners very wary.
If you are ending up on a lot of meds because of all the symptoms you could try arguing that it would be cheaper.....may or maynot work. You could try asking for a trial to see if it helps -though in your case with a TSH of over 4 its very likley you will need more than the starter dose.
Its worth keeping a close track on what is happening. Keep copies of all blood tests, plus your own, a log to go with it of any supplements you take, your temp & pulse first thing before you rise & signs & symptoms. If you can demonstrate a continous decline even if still under range your Doc may reconsider. Seeing a private specialist may help too.
My apologies for the incorrect info re sourcing the list of thyroid docs. Thankfully Red Apple has corrected this.
waveylines Rechisholm Louise Warvill is now Louise Roberts (married a few years ago) 
For the list of thyroid friendly doctors, members should email tukadmin@thyroiduk.org thyroiduk.org/tuk/About_Us/...
Thanks Red Apple. I didnt know that. How lovely. 🤗😊
Thanks for the update on the correct way to get info on doctors.
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 Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Ask GP to test vitamins and thyroid antibodies
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
Medichecks currently have an offer on
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
Link about thyroid blood tests
thyroiduk.org/tuk/testing/t...
Link about antibodies and Hashimoto's
thyroiduk.org.uk/tuk/about_...
thyroiduk.org.uk/tuk/about_...
List of hypothyroid symptoms
thyroiduk.org.uk/tuk/about_...
NHS guidelines say TSH should be under 2.5 if TTC
verywellhealth.com/infertil...
Pregnancy guidelines
thyroiduk.org.uk/tuk/about_...
gp-update.co.uk/files/docs/...
See pages 7&8
btf-thyroid.org/images/docu...
Obviously good vitamin levels are essential for a baby's development
Email Dionne at Thyroid Uk for list of recommended thyroid specialists
I am having the exact issue! I am thinking of going to a private GP to get my referral to see a consultant on Axa.
Sorry to hear you’re going through the same thing! Yes I’m looking into a private GP now
Koko04 and Rechisholm
First step it to get FULL Thyroid and vitamin testing privately, (if GP can't/won't). Make sure to do test as early as possible in morning and fasting
Come back here with new post once you get results
Members can advise on next steps
You have my utmost sympathies. Your levels and your experience was very similar to mine 10 years ago. You have to keep pushing. See another GP....or even a private GP if necessary, just don't give up. Write to the head of your surgery and explain your position. It's so tragic that we have to feel this desperate! X
I had exactly the same for about six years . By some miracle I went to the doctor as we were trying to get pregnant again and I was so lucky I got a Gp who did a full thyroid check , this showed I had high TPO antibodies, I was asked to come in and saw a locum who admitted he didn’t really know what that meant , he wrote to an endocrinologist for advice who asked to see me and agreed to start me on Levothyroxine at the end of last year . It is heartbreaking to know you are not well and to be ignored. Did your GP do a full range of blood tests for fertility? Might be worth thou doing that privately?
Thanks 1880 Emma, I’m looking into going to a private GP to get the tests done.
My understanding is a GP can refuse to refer you to an NHS specialist but cannot refuse a referral to a private specialist. It’s possible you could approach your private health provider, they send you to a consultant who then asks your GP for your medical background.
I don’t think it can hurt to ask your private health provider’s advice.
Getting NHS help for thyroid issues is hard enough but when your future family life is involved it’s cruel that a GP won’t act.
Thank you 06hollyberry, I have asked the GP several times but she won’t refer me, even when I told her I have private healthcare and that AXA have confirmed they will treat me at those levels. I’m thinking of going to a private GP and getting referred that way.
You don’t need a referral to see an Endo privately. You can book it directly. I did this. No need to go via a private GP.
A GP doesn't have anything to do with a private consultation
You choose to see who you wish privately. Make an appointment. GP is obligated to to write a basic covering letter to consultant.
Email Dionne at Thyroid Uk for list of recommended thyroid specialists
But BEFORE making any private appointment you need to get full private testing
Very often vitamin levels are very low. Getting these optimal can reduce symptoms and/or increase TSH so that you can get treatment
Medichecks currently have 20% off all tests until end of May
Hi, if you have Axa-ppp health cover they have a Dr at hand service where you can speak to a Gp (they are very good) either by Skype or phone with appointments available all day within two hours - if it’s not included on your policy you will have to pay for the consult but may well get a discount- the point being that the Dr at hand service will do a referral for you if needed and fax it straight over to the claims team for you. You just need to speak to your policy team get the details for contacting Dr at Hand and find out if it’s included in your cover- if not you may get a discount as a member on the £50-60 I think consultation fee ( and that amount is for three consultations)
Hope this helps,
Good luck!
Nikki
I do feel for you...I have been HYPO for many years and have been treated by the same GP for many years. My TSH had been 4.5 to 5.1 for many years. As I was ignorant about the the whole thing I had never thought to question it. It wasn't until tha GP retired and I was moved to another GP in the same surgery that he called me in and said that I have been OVERTREATED for many years and proceeded to reduce the amount of Levo I was on, so that my TSH now is 1 or 0.1! However, like all GP's only TSH (occasionally T4) was tested. I certainly don't feel better now... I have asked him to refer me to a Endocrinologist I chose privately and he did. My point here is, your GP CANNOT actually refuse to refer you to a Private Specialist! If you read about your Patient Rights in NHS Choice... it will confirm this!! I actually find a GP's REFUSAL' to refer a patient to a Specialist not only frustrating, but also quite outrageous and arrogant.
I really sympathize with you. My TSH is 10.68 but my GP refuses to treat me and I feel so ill that I don't have the energy or will to fight him.
The point is, we shouldn't have to fight and argue just to get the treatment that we need from a health service that we have contributed to all our lives!
See a different GP urgently
TSH should be under 2
See flow chart on page 2 - clearly stated anyone with TSH over 10 need treatment with Levothyroxine
I think Nice guidelines fir sub clinical hypothyroidism are tsh over 4ish plus other symptoms - print out for your doc or try a new doc. Call your insurer re private referral - Endos are not consultants so should be able to self refer. Try all routes as only you know how you feel. Best of luck!!!
There are, currently, NO NICE guidelines for hypothyroidism.
There are, however, Clinical Knowledge Summaries which appear on the NICE website. However, these do not have the status of NICE guidelines.
Endocrinologists are consultants. Some might see you privately without a referral, others will insist on a referral. It is the consultant's choice but any insurer might also insist on referral before they will cover the cost.
Thanks I didn’t know the difference re the NICE guidelines. In my case, my doc did follow them.
Found this site recently and found it helpful. msdmanuals.com/en-gb/profes...
It says “For patients with TSH levels between 4.5 and 10 mU/L, a trial of l-thyroxine is reasonable if symptoms of early hypothyroidism (eg, fatigue, depression) are present.”
Yes, that is from the giant USA company Merck Sharp & Dohme.
As almost always, completely ignoring the possibility of central hypothyroidism. And arbitrarily plucking the number 10 out of the air. And what is the point of picking two possible symptoms when there are so many and a large number of doctors would not recognise a lot of them as being associated with hypothyroidism at all. They do NOT provide a test of early symptoms being present.
As many are ill with TSH below 10, often for years, the use of the term "early" is also highly inappropriate.
The NICE Clinical Knowledge Summaries are here:
cks.nice.org.uk/hypothyroidism
Magnesium!!!! Please - google Dr. Carolyn Dean. She has a mineral supplement plan that is hands down wonderful. You would be amazed at how so many things can be caused by magnesium deficiency.
Do you mean Dr Carolyn Dean formerly of Canada? As here:
casewatch.net/foreign/dean/...
I visited what appears to be her website - which looks like a single page that has been put up because it has been required by some sort of commission or board:
Before jumping straight into the heavy sales site:
It appears to be a very expensive way of buying magnesium chloride.
Just a little comment I have yet to see a private Consultant whether an endo or not without the said Consultant insisting I am referred by my GP. Ive also never had a GP refuse a referral to a private consultant. Even on my health insurance claim for it asks if my GP has referred......wont pay out otherwise.
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