Hello, I haven’t felt like myself for over a year, started with acid reflux, swelling of hands, feet, eyes and cheeks then itchy skin, fatigue, slow movement, low mood. GP agreed to do blood test, nothing came up except high cholesterol. GP prescribed statins for high cholesterol, antihistamine for swelling and told me to take gaviscon for acid reflux!
After multiple appointments with my symptoms I decided to go down the private route as my gut was telling me something wasn’t right!
Both my T3 and T4 were low indicating hypothyroidism which private consultant confirmed! I took this information back to my GP who dismissed the test results, said they would need to do another TSH as T3 and T4 not an accurate indication for hypothyroidism! I’m exhausted going back and forth! Any advice?
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You're in a difficult position because the NHS and most Endo's place far too much importance on TSH, believing it to be the only true indicator of thyroid status. As thyroid patients we know this not to be true.
Your results look like central hypo or secondary hypothyroidism where the link between the pituitary and thyroid doesn't work. Usually with the FT4 & FT3 results that you have i.e. below range your TSH would be high but it isn't which is whats throwing your GPs off.
Have you asked for a referral to an Endo on the NHS? Unfortunately I think there are long waits at the moment. GPs have little experience of this and may not be aware of the issue.
What did your private Endo say? Is he offering treatment?
Unusually your vitamins all look good. Are you supplementing already?
I do supplement Vitamin D and have a good diet with lots of exercise until recently due to the low mood and fatigue.
Private clinic said they would treat with Levothyroxine however that comes at a cost and would be free through NHS however GP is challenging the results due to the TSH result despite extensive symptoms and the T3 and T4 result. Next NHS blood test can be done end of May, that’s another 4 weeks of feeling horrendous and having a huge impact on my day to day wellbeing, work and relationships 😔
Could you get your GP to write for advice from a local Endocrinologist? That would be the fastest route as GP unlikely to prescribe as little experience of secondary hypo.
I suspect it will take quite some time to get diagnosed on the NHS but you need to get your GP up to speed that its likely not primary hypo which is what they deal with all the time, but secondary hypo. Likely your GP/s are a bit out of their depth but they should get advice from your local Endo.
Point out that both FT4 & FT3 are below range yet TSH is normal.
The trouble with going privately to begin treatment is that the NHS will always question the diagnosis if they don't agree with it, and it can cause problems in years to come if they insist you stop your treatment to prove your diagnosis.
Levo is pretty cheap to buy privately although obviously the cost of seeing an Endo is quite high.
Measure sex hormone-binding globulin (SHBG) — this is normal to low in women with PCOS and provides a surrogate measurement of the degree of hyperinsulinaemia.
Jaydee1507 Thsnk you for all the information, really helpful.
I will suggest GP refers me to endo and mention the points raised above. I’m just so fed up of feeling like this and my quality of life is affected on a daily basis as well as having a knock on effect on my family. I wouldn’t choose to go privately however after speaking to the surgery I can’t get another blood test until end of May then it’s a week for results then arranging an appointment with GP to possibly get agreement for treatment where the private clinic have agreed treatment and can see them on the 15th May to get started with regulate pre scheduled blood tests.
Like Jaydee1507 says, you have to tell your surgery explicitly and clearly that "according to Thyroid UK" your recent tests show likely secondary hypothyroidism and the NICE guidelines say this requires an URGENT discussion with an endocrinologist . If surgery is nearby I personally would print the page from NICE, highlight the relevant lines, and say "this is urgent , or should you go to A&E to start treatment?" Or copy and send with a covering note to the practice manager. You've effectively already waited a year to start treatment , who knows what damage this is doing to you?
healthkiwi Really helpful thank you. I wasn’t aware of do much information or the urgency! It’s frightening to think that this is so misunderstood and goes untreated. I will follow up with your suggestions.
I have always been very active and now some days I struggle to get out of bed due to fatigue and low mood. The weight gain, acne, water retention, puffy eyes, cheeks, hands and ankles has knocked my confidence and as you said goodness knows what other damage it’s doing.
I know yr concerned re cost for private prescription etc but if no joy on the GP front cos of their ignorance, would it not be better to start treatment+begin to feel better via the private route. I had to go private cos of GP ignorance+best choice I made. No longer look like Mechelen Man, walk every day, have more confidence, my hair is in much better shape+severe constipation dealt with. Even my nails are improving! That's just my story as a nearly 75 yr old after 40 yrs on levo+due to being a poor converter needed T3, which GP said was irrelevant - so you see what we are up against!! Trust you get the support you need from the NHS!
Lottyplum Pleased to hear you have been able to get treatment and you are feeling better. Sorry to hear you had similar challenges!
My gut is telling me to start private treatment as there is no guarantee through GP and it means prolonging things even more. As time goes on more and more symptoms are coming up, my voice has changed I’m feeling the cold more and the weight gain despite a good diet and exercise is ever increasing!
Thank you for sharing your story I hope you continue to feel the benefits
Since being with my private Endo had lots of blood tests+ autoimmune blood tests never had before, even tho diagnosed with Hashi decades ago after thyroidectomy. He wanted to get baseline+has rule out any further autoimmune issues linked to my thyroid (or lack of!). I pay for my own T3 (will cost me about £80 a year as I take 5mcg 3x a day). I don't want my GP surgery involved in my thyroid treatment so pay for my thyroid blood tests, too, as just TSH +/or T4 is totally inadequate. My husband totally agrees with this+supports me as he sees the wonderful health benefits. Go with yr gut + get well! 💪
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