Hypothyroid NHS treatment

[th2304]

I am a 72 year old male and have had under active thyroid since my mid 30’s. I have really struggled the past ten years with extreme tiredness, lack of energy and fuzzy /cotton wool head. Two years ago my GP tried to get me an appointment with an endocrinologist but was unsuccessful, apparently he was told that they will only see someone with an overactive Thyroid in my nhs area (Portsmouth, Hampshire), also a T3 blood test was rejected, GP said lab send it back as inappropriate request. A recent blood test indicated T4 was 21 and TSH 0.03 and GP lowered my Levothyroxine to 125 mcg daily, was alternating 150 mcg and 125 mcg on alternate days, and I now feel even worse. Apart from hypothyroidism I am in good health and am told I look more like 62 than 72 (wish I felt like that). I previously asked GP if I could be prescribed T3 to see if it improved me physically but was turned down, will not prescribe unless approved by endocrinologist, who I cannot get an appointment with, so basically I am left feeling that I will have to spend the rest of my life just existing as our GP’s seem to prescribe Levothyroxine only, based on T4 and TSH levels which I am sure is not satisfactory for all hypothyroid patients. Does anyone know if I have received appropriate NHS treatment, or is it just a post code lottery regarding thyroid treatment, any advice would be greatly appreciated.

Terry Hughes

[SeasideSusie Remembering]

Hi Terry

So sorry that you are yet another victim of useless thyroid treatment here in the UK. However, you have come to the right place to get some help.

First of all, do you have reference ranges for your test results. As ranges differ from lab to lab, we need them to properly interpret results. We know that your TSH is low, but we don't know exactly where in range your FT4 is. If it's high in range then it's important to know your FT3 result to see if you are converting T4 to T3 well enough.

As you can't get T3 tested through your GP, you can do it privately with a home fingerprick blood test (or venous blood draw) through one of our recommended labs. And while doing that, take the opportunity to test vitamins and minerals as well because it's important to have optimal levels for thyroid hormone to work.

So first thing to do is order one of these tests (same test different company)

medichecks.com/thyroid-func...

bluehorizonmedicals.co.uk/t...

When you have your results, make a new thread and members will advise.

[th2304 in reply to SeasideSusie]

Hi Sisie

Thank you for your response, I will try to find out from GP next week if they have FT4 level, I was just told T4 was 21 and upper range limit is 20, so don’t know if that is total T4 or free T4. As for the lab I assume it is the lab at our local hospital, Queen Alexander, Portsmouth. I saw on one website (may have been a USA site) that optimal T4 range is 15 to 23. It’s so frustrating that the NHS only seem to have a one med solution based on the very basic and minimum blood tests to treat hypothyroidism, and GP’s in my practice seem reluctant to even discuss it. I suspect many thyroid deficient patients have a greatly reduced quality of life because of it, apart from other potential medical problems that can result due to inadequate treatment. Does the finger prick blood kit give total and free T4 levels, or is it just for T3 ?

Many thanks

Terry Hughes

[Hidden in reply to th2304]

In the same area as you Terry and twice my GP asked QA to test my T3 with no success. Now I can’t even get my T4 tested.

Di

[th2304 in reply to Hidden]

NHS seems to be a Postcode lottery, and for most thyroid patients inadequate compared to other western countries.

[SeasideSusie Remembering in reply to th2304]

Here in the UK it tends to be FT4 that is measured by NHS. In over 40 years of hypothyroidism I've never had total T4 tested by NHS. Each lab has it's own range so it has to be that one, you can't use any other lab's range.

If your level is 21 with top of the range being 20 then there's a chance your FT3 is low and conversion is poor but FT3 has to be tested at the same time as FT4 to know.

If you check the links for the tests that I gave you then you will see that they do the full thyroid panel and all the important vitamins and minerals, and those will give a complete picture.

[Hidden in reply to th2304]

If you go online to the two sites above you can choose from a range of Thyroid tests.

You will be able to find different tests to cover things you require. Then post the results on here including the ranges.

Take the test first thing in the morning on an empty stomach and leave Levo off for 24 hours prior.

[th2304]

Many thanks will check links to order test kit.

[Treepie in reply to th2304]

I only once managed the finger prick but you can get a blood draw at a private hospital at more cost or a home visit.

[th2304 in reply to Treepie]

Thanks for that tip, there is a Spire hospital fairly close so will look into getting blood drawn there if required. If it’s just a small finger prick blood sample required then can do that at home but suspect a larger sample will be needed.

[Treepie in reply to th2304]

The problem is getting the blood to flow to fill the tube ,you have to be well hydrated and warm up your hand . When I failed I was sent another pack and offered the hospital draw as an option. Have since stayed with it. You need to book as early as possible and not a Friday as do not want blood undelivered over weekend.

Both private testers have offers from time to time ,Medichecks has offers every Thursday.

[th2304 in reply to Treepie]

Thanks for your advice on this will phone medichecks to see what options I have for hospital draw in my area.

[Anthea55]

Just a thought - as I understand it we are allowed to choose the hospital to which we want to be referred. Can your GP refer you to a hospital out of your area? I don't see why not.

Definitely agree with SeasideSusie that you need to get private blood tests done, then post results here.

[th2304 in reply to Anthea55]

Thank you for advice, I will look into getting private blood test done and take it from there.

[silverfox7]

Definitely soundsas though you aren't converting well. So wouldxbe worthwhile to get Vit D, B12, folate and ferritin tested as well. Those 4 help your thyroid to work, help improve conversion and can help so if the symptoms as well.

[th2304 in reply to silverfox7]

Thanks for advice, was thinking best to get the lot checked, I have been taking some vit B,C,D,Zinc and Selenium supplements for some time now and can’t say that I feel any better for it. Will give the lab a call for advice to see if I should come off these before blood tests. Also I thought that Levothyroxine was all the same but many people seem to have varying results/benefits from different pharmaceutical brands, the pharmacy in our health centre just seems to have Teva Levothyroxine, so maybe I should try a different brand from a different pharmacy. I have always been taking my Levo around 7am a good hour before I eat anything because I was told that food, milk, and other meds such as indigestion’s remedies can interfere with its effectiveness, maybe taking last thing at night would be better ?

[silverfox7]

I would try changing from TEVA as there have been loads of complaints about it. I did try taking Levo at night and did think it was slightly. Enter at night. The feeling is that when you are asleep you maybe absorbing morn but then I went on holiday with a friend and realised that we would probably be eating late so I didn't fancy having to wait longer to take my meds. I was the only driver so needed to be alert the following morning!

[th2304 in reply to silverfox7]

Will see where I can get Teva alternative. My understanding is that Levo is best taken on empty stomach and believe but may be wrong that it takes about 6 hours for stomach to empty which make last thing at night seem less than ideal. I currently take mine at 7 am but have noticed a pattern where I sometimes feel a little less fatigued and less brain fog from about 7pm so maybe last thing at night may be better for me, either way will get blood test from Medicheck, they currently have an offer of £79 instead of £99 for the more comprehensive test including vitamins, plus £25 for blood draw at local hospital, finger prick blood sample won’t be sufficient for these tests. Whether our GP will take these blood test results into account is another matter.

[silverfox7]

I think it's 2-3 hours at night. The 3 hours if it's a protein based meal as takes longer to break down so not suitable for all. Plus I sometimes have/like a snack on an evening.

[th2304 in reply to silverfox7]

2 to 3 hours would be fine for me, we normally have dinner between 5 and 6 pm and if I did have a few nibbles in the evening (rare) it would not be later than 9 pm, so taking Levo at around midnight before settling down would work for me. I did take my Levo at midnight last night so will see if I feel any difference, but don’t imagine there would be an instant change if any.

[silverfox7]

No, may be need a longish trial. Let us know how you get on.

[th2304 in reply to silverfox7]

Yes will report if I notice any benefit.

[th2304]

It’s early days but I have been feeling a little less tired and brain fogged since taking Levo last thing at night, still not great but not as bad. Definitely not imagining it, anyone who suffers with brain fog symptoms will know what I mean. I am also on 10 mg daily of Atorvastatin which I also take last thing at night, so don’t know if that has any effect on the time I take Levo. From what I have read there is no interaction between Levo and Atorvastatin, but we all know that published drug interactions are not reliable, I say we all know, except doctors who in my experience often tend to ignore real reported interactions and side effects from patients. Interestingly my TSH last blood test was very low and I have learnt from this forum that Statins can lower TSH, but I doubt this is considered by GP when prescribing Levo dosagage. I was diagnosed with under active thyroid in 1983 and was fine on Levo until about 12 years ago, so clearly something has changed.

[SeasideSusie Remembering in reply to th2304]

Terry

Make a new thread about statins (put it in title), there are some members who know something about this.

Did you decide to get a private thyroid blood test done?

[th2304 in reply to SeasideSusie]

Will be getting blood test done after holiday, going to Cuba in 3 weeks and don’t want to go to docs with any potential new issues that could affect insurance. I have already spoken to medichecks and can get blood draw at local hospital. Many thanks for your advice.

[LindaC]

Just typed this, only to note is was posted around 9 months ago - have you shared any updates on this?

I am so sorry to hear that Terry - I don't know why but this shocked me - that some regions won't even permit endo consultations except for hyperthyroidism. Just when I think I can't see anything worse... a new level of abuse pops up, again.

In the good old tradition of hypothyroidism - with quite a rich history - HOW YOU FEEL is a huge and the best indicator. Increasing/decreasing dosages of hormones and a trial of T3 or NDT would be the best way forward, NO THE ONLY course of action in a semi-civilised society, yet where hypothyroidism has been taken back [if only to the early/mid 20th C] to the Middle Ages. Sadly, there seems to be no Renaissance in sight with these stubborn, arrogant and ignorant 'beggars'.

You've been given plenty of great info below, so I just want to say how much I feel for you in these appalling circumstances. KEEP AT THEM or find your own way.

Take care and be well. Seasons Greetings and very Best of Luck.