I finally thought I was going to get some help this week after a blood test came back that my TSH was 4.5 and T4 was 12.5 pmol/L (normal pmol/L is 12-30). Although the T4 just missed the low bracket, I had thought that along with the high TSH, symptoms and family history, that I would be able to get levothyroxine for it. I was very wrong.. I was told that it wouldnt be treated but they can test again in a YEAR!
From reading some threads on here I can see that I'm not the first person this has happened to. Can anyone recommend doctors that might prescribe? I was thinking of trying a private thyroid specialist consultant but I dont want to waste the money if people find they still arent getting medication via this route.
I'm at my wits end with this. I am having to starve myself to holt the weight gain. Around 6 weeks ago I dropped down to max 1000 calories a day (drink and food), but was still steadily gaining about 2/3 pounds a week. Ive now dropped to 600 calories a day and finally the weight gain has stopped. But I cant carry on long term on 600 calories a day, it feels like I'm silently starving myself and no one can see it because I'm not losing weight.
It's also worth noting, I am intolerant to dairy, gluten, sugar and anything processed. So I eat very healthily as I really have no choice but to make everything fresh. I have noticed a lot of people are going gluten free and sugar free to help with Hypothyroidism and I am wondering if my food intolerances are masking a TSH score that would be worse had I not always followed this diet.
Has anyone had more luck with medication if they are trying for a baby? Me and my partner were planning a baby in the next year or two but I'm extremely scared about the risk if I have untreated subclinical Hypothyroidism. My cousin had this and had a very late miscarriage a few years ago so it feels like a very real and scary risk to take.
Any advice on how to get medicated or any good doctor's would be great. If anyone has been through a similar situation it would be great to know more.
Written by
gjm1904
To view profiles and participate in discussions please or .
Wherever possible I would recommend getting an NHS diagnosis. The reason for this is that the NHS willlikely not accept your private diagnosis, refuse to prescribe and you will be always in the private system. They may also try and get you to stop thyroid treatment to prove you actually have the condition. Its not a good place to be. I'd recommend finding a more helpful GP to discuss this with who will retest you in 3-4 months. NICE guidelines state you can be treated with 2 consecutive TSH's above range.
It's unlikely dietary changes would affect TSH although they will help you feel better so well done for working those out.
Get helpful GP to check key vitamins - ferritin, folate, B12 & D3. Hypo people get low stomach acid and cant absorb vitamins well from food even with a great diet.
Have you had antibodies tested?
When you retest, book appointment for 9am or close which is when TSH is highest.
I was diagnosed with a TSH of 3.5 with horrible symptoms by a private endo as I could show a history over 4 years of my TSH rising steadily in line with the symptoms. My GP accepted the private diagnosis and prescribed levo through the NHS. I asked the private endo about whether the GP would accept the diagnosis and he said as long as the thyroid specialist is also an NHS consultant then they are not allowed to dismiss it.
Was this test done early morning, ideally 9am latest This gives highest TSH
yes it was done at 8am. I’m doing another next week at the same time. I know the nurse at the doctors so she is doing it for me before they properly open so the reading is highest.
Just testing TSH and Ft4 is completely inadequate
The antibodies test and T3 all came back as normal.
Any close family members with any autoimmune diseases ?
My dad has an autoimmune disease, I’m not sure the exact name but it’s a type of haemophilia. My mum and 4 other people on my mums side of the family all have hypothyroidism. My mum had to have a thyroidectomy years ago when she was hyperthyroid as she got down to 5 stone! So there’s a strong family history of it.
If you are planning a pregnancy then a TSH around 2 would be advisable. I would tell your GP your plans and the need for thyroid meds for a safe pregnancy.....
Hi gjm1904 you would need two consecutive 'over range' TSH result ( taken 3 months apart) before NHS GP's can consider treating sub-clinical hypothyroidism with Levothyroxine .
(Some other parts of NHS information for GP's say 'TSH over 5' rather than 'over range' )
It would not be good practice for a private gp/endo to treat subclinical hypothyroidism based on just one very slightly raised TSH result .. (to avoid starting Levo inappropriately as a 'one off' raised TSH result could be due to another temporary cause)
if TSH is persistently raised after 3 months and going higher , then they may test Thyroid Peroxidase antibodies (TPOab ) to see if there is an autoimmune cause to explain the hypothyroidism.
If this is positive , GP's feel more confident that treatment with Levo is likely to be required at some point in the future anyway .. so they are more confident to prescribe it on for sub clinical hypo if TPOab result is positive .
And also symptoms of hypothyroidism need to be taken into account
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
was your TSH result of 4.5 over the lab range ?
and was it your first over range TSH result ?
NHS guidelines for treating sub clinical hypo:
(sub clinical hypo is defined as "TSH over the lab range , while fT4 is still within range")
"1.5 Managing and monitoring subclinical hypothyroidism
Tests for people with confirmed subclinical hypothyroidism
Adults
1.5.1Consider measuring TPOAbs for adults with TSH levels above the reference range, but do not repeat TPOAbs testing.
Treating subclinical hypothyroidism
1.5.2When discussing whether or not to start treatment for subclinical hypothyroidism, take into account features that might suggest underlying thyroid disease, such as symptoms of hypothyroidism, previous radioactive iodine treatment or thyroid surgery, or raised levels of thyroid autoantibodies.
Adults
1.5.3Consider levothyroxine for adults with subclinical hypothyroidism who have a TSH of 10 mlU/litre or higher on 2 separate occasions 3 months apart. Follow the recommendations in section 1.4 on follow-up and monitoring of hypothyroidism.
1.5.4Consider a 6-month trial of levothyroxine for adults under 65 with subclinical hypothyroidism who have:
a TSH above the reference range but lower than 10 mlU/litre on 2 separate occasions 3 months apart, and
symptoms of hypothyroidism.
If symptoms do not improve after starting levothyroxine, re-measure TSH and if the level remains raised, adjust the dose. If symptoms persist when serum TSH is within the reference range, consider stopping levothyroxine and follow the recommendations on monitoring untreated subclinical hypothyroidism and monitoring after stopping treatment."
Yes the lab range was 0.22 to 4.2 so it was over but only slightly. I did have a blood test a year ago but was told the results were fine. However I do remember looking at the results and thinking ‘oh that’s on the high end end that must mean my thyroid is working really well’ but didn’t realise at the time that high meant low function haha. I will get the test from last year re printed as that might help then if it showed it was already slightly high and it’s now gotten worse.
Thanks for replying. I did get the antibodies checked in the full blood test but they seem to really low so I think I’m fine on that front.
Thyroglobulin antibodies were 12 IU/ml (normal levels listed as 0-115)
Thyroid peroxidase antibodies were 9 IU/ml (normal levels listed as 0-34)
T3 was 4.4 pmol/L (normal listed as 3.1-6.8)
So it seems it’s just the TSH that’s over and the T4 is looking low even though it’s just missed the cut off.
I’m having another blood test next week so hopefully if that one is the same they might medicate. I will push for it and mention that I am TTC and maybe that will change their decision.
I would really prefer to not have to go private but I definitely can’t just carry on and wait until next year to test again as they have suggested might be the case .
I see you have great advice already on testing etc. I had a similar situation on TSH 4.8 but re tested in 12 weeks (got back to GP as symptoms intolerable) and got a 5.5.
diet of 600 calories a day will put your metabolism into starvation mode. We hypos are physiologically designed to survive famines. Eating less won’t actually help you.
To lose weight you will need to up your good fats and proteins considerably to reassure your body there is no famine.
Low but not complete keto for carbs, avoid sugars and very starchy foods.
Avoid over exercising too, gentle short routines will help. Long runs or body blaster workouts will again put the body under stress and affect your hypo metabolism.
Getting vitamins optimal also sees a drop in weight.
Bear in mind starting Levo often causes initial weight gain (6kg in my case) so don’t think that once prescribed it’ll come off, sadly doesn’t work like that. It’s taken 9 months of dose increases for me to get back to where I started which is still 6kg more than ‘normal’ for me.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Could be be hypothyroid/subclinical?
What causes subclinical hypothyroidism?
subclinical hypothyroidism but all the symptoms
Recently diagnosed subclinical hypothyroidism
Subclinical Hypothyroidism?
