Advice for next steps please

[RosieRuggles]

I am looking for advice. What do I say at my GP appointment next week? I have awful fatigue symptoms and am currently off work, unable to cope. November 2022, my NHS hospital blood test results look like this:

TSH 0.06 (0.3-4.5)

FT3 4.8 (3.1-6.8)

FT4 20.4 (10-22)

This was on a dose of 125mcg Levothyroxine. I had heavy legs, some fatigue, some anxiety, poor sleep and got hot/sweaty easily. Having got the all clear for thyroid cancer (thyroid removed and RAI), the next stage in treatment was to raise the TSH as it no longer needed to be suppressed. My dose was reduced to 4 days 125mcg and 3 days 100mcg. The anxiety, poor sleep and feeling hot went away. Fatigue symptoms have worsened: weak legs, dry eyes, little energy and stamina, daily headache and some tingling in my legs. Follow up NHS thyroid function test results done in January look like this:

TSH 0.1 (0.3-4.5)

FT3 3.8 (3.1-6.8)

FT4 19.0 (10-22)

As I was suffering from fatigue, the hospital suggested that I got blood tests done at the GP surgery. I stopped B12 Complex supplements a week beforehand. Here are those results:

vitamin D 72 ( I am supplementing with a vit D/Vit K spray to aim for 100; and take magnesium.)

B12 779 (I have stopped the B12 Complex as this is over the range.)

Ferritin 118

Folate 17.4 ( I want to aim for a level of around 20 so I have started taking methyl folate.)

So, these levels are not to blame for my symptoms. However, I have just been told that the hospital endocrinologist feels that my fatigue is not thyroid related and if the symptoms persist, see the GP again. I have promptly made an appointment to see my GP next week but I don't know what I am supposed to say. Unless I have a serious illness that I am unaware of, I believe that the low FT3 result (19% through the range) plus my symptoms are directly linked to the reduction in Levothyroxine. I need to get well and get back to work. I was absent for months during the cancer treatment and haven't felt well enough to go back to my normal hours. I am on a reduced work load and work part time and now I can't manage that. I don't know what the endocrinologist is expecting the GP to do! (My next hospital appointment is May. They won't bring it forward. I am under care of the hospital for thyroid cancer monitoring for the next few years.)

I have learned so much from HealthUnlocked and consequently have done everything I can, diet and supplement wise, to try to make myself feel as well as I can. Can anyone help please?

[SlowDragon Administrator]

Like thousands of thyroid patients on just levothyroxine, your Ft3 is too low

You have poor conversion. Very common, especially after RAI or thyroidectomy

You will need T3 prescribed alongside levothyroxine

T3 (liothyronine ) can’t be initiated by GP.

hospital endocrinologist feels that my fatigue is not thyroid related and if the symptoms persist, see the GP again. 

Ideally your NHS endocrinologist would have prescribed

Vast majority of endocrinologists are diabetes specialists and useless for thyroid

Email Thyroid U.K. for list of thyroid specialist endocrinologists and doctors who will prescribe T3

[e-mail]

Best option is to pick someone who’s private and NHS

See them privately and then transfer to their clinic on NHS

Thousands of U.K. patients forced to go private to get treatment

Roughly where in U.K. are you

Some places worse than others

Over 61,000 prescriptions in England in last year

Typically 6 prescriptions per person per year

openprescribing.net/analyse...

[RosieRuggles in reply to SlowDragon]

Thank you so much for the swift response. I am so disappointed but shouldn't be surprised to have to go down the private route. I am in the North East of England. Liothyronine prescribing for NHS Newcastle Gateshead looks low. I wonder if there is anyone reading this from my area who has got T3 on NHS or privately?

[pennyannie in reply to RosieRuggles]

Hello RosieRuggles ;

I am not in your area but just wanted to confirm that you are not wrong in your understanding of how things are.

Looking at your first post your T3 was up in the 5's and this is where it needs to go back up to if you are to have any chance of feeling better than you currently are and firstly you could ask for your higher dose of T4 to be reinstated.

Well done for the vitamin and mineral build up and this will likely need to be maintained on a regular basis.

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg. - with T3 said to be around 4 times more powerful than T4.

Some people can get by on T4 only:

Some people find their health restored better by adding back in that little bit of T3 lost when they lost their own natural thyroid hormones and take a T3/T4 combo :

Others can't tolerate T4 and need to take T3 - Liothyronine only:

Whilst others find Natural Desiccated Thyroid suits them better as it contains all the same known hormones as that of the human gland and derived from pig thyroid dried and ground down into tablets referred to as grains.

All the above options were available from your family doctor up until around 20 years ago, and if your health and well being were not restored well of T4 monotherapy s/he could have worked with you with these various options to find what worked best for you.

Currently primary care doctors can only prescribe T4 and you will need to be referred and assessed by an NHS endocrinologist should you wish to try any other thyroid hormone replacement option and I'm afraid the decision to treat is more likely based on financial constraints than medical need.

I had RAI thyroid ablation for Graves Disease back in 2005, so a totally different situation to yourself, but was refused both T3 and NDT by my surgery and hospital in 2018 so I now self medicate and buy my own full spectrum thyroid hormone replacement and am much improved.

[arTistapple in reply to RosieRuggles]

T3 prescribing is virtually non-existent in Newcastle-Gateshead. The very few ‘outliers’ I assumed are getting it, were the likes of yourself - that is patients who have been through what you have been through! If you are not getting it (when it’s a recognised procedure) who is getting it? This area is what I call a strictly No T3 zone. Its ruled by an endocrinologist on a mission. He publicly ridicules thyroid patients. I was just reading some new info on my GP’s website. T3 is described as ‘black listed’. That fact makes me boil with anger. They might just as well say all hypothyroids who enter here will get no help. Finito! Even if you fit the national guidance it’s clear you will not get T3 in this area. However as you doubly clearly fit the national guidance, I am triple shocked. I went outside the area, privately but at the first sign of a problem with T3 I was promptly got rid of. My GP now wants me to have a diagnosis of CFS/ME, put me on anti-depressants etc etc. There really is an absence of will to help thyroid patients in this area. It’s just too easy to get rid of us. I wonder how these GPs following the instructions of such a useless endocrinology department really feel, when patients get dumped back to them who are not thriving? Or does GP training/knowledge put them directly in the same bag? Even levo is not dispensed with any sense of they know what they are doing. If I won the lottery I would ……….

[RosieRuggles in reply to arTistapple]

I appreciate your findings and comments, thanks very much. I know not to get my hopes up when I see the GP and will have to come to terms with feeling let down after being so well looked after up to now. I’m sorry to hear you were got rid of after going private and hope you find an alternate path to feeling well. It’s so cruel.

[arTistapple in reply to RosieRuggles]

Who knows RosieRuggles? You might land lucky. Thanks for hearing my rant.

[RosieRuggles]

Thank you for your reply.

I’m pleased with myself for having good vitamin levels. Thanks! I credit HealthUnlocked for that. After reading about so many dreadful cases and people in need of proper care, it dismayed me to have received the response I got from the endo yesterday. I can’t believe I have become one of those people I read about here everyday, literally in need of serious help. Thank you for confirming my thoughts about my understanding of the levels. I was beginning to think maybe I have some other serious, silent illness as the cause, since the endo ‘feels’ it’s not thyroid related. It’s quite baffling really. I dropped the sciences at school, but wanting to know about my diagnosis, have learned from various sources about its treatment. How come I can interpret my symptoms and results but she can’t?

It feels a bit unnerving to deviate from the treatment plan. I have had excellent care. You have to put your life in their hands. I have got through the cancer treatment one step at a time and through the other side (fingers crossed) but it is the thyroid treatment that has me floored.

It heartens me to know that you can be put right, whether like you, self medicating or going private. I think I would be too scared to self medicate just now as I am still early in the journey. I need to get used to the idea of having a new plan of action and get started.

[pennyannie in reply to RosieRuggles]

Well, yes, I agree and would prefer to be in the system and believe someone had my back :

Your Thyroid and How To Keep It Healthy is a very good, sometimes funny, insightful, easy read on all things thyroid and whilst the title reads as though it's ' not for us ' as we haven't thyroids - it is,

Written by a doctor who had hypothyroidism, and resigned from the profession because of the structure he found himself having to work within, I still use Barry Durrant-Peatfield's book as my go-to.

Repairing your body back to better health is a bit like doing a jigsaw puzzle with some missing pieces, as you already have the picture and have already started on the vitamin and mineral corners so you too can fill in in the pieces as you find out more how to get things fixed.

If you go into Open Prescribing as previously linked and suggested by SDragon you can see by surgery and or CCG/ICB area - how active your surgery is in prescribing T3 / NDT - and at least if they are seen to be prescribing there is a chance they will be supportive.

just pop Liothyronine in as the drug and for NDT enter Armour - ( the brand the NHS prescribes most ) :

P.S. When replying to someone just ensure you have pressed the icon alongside their message to you as then they get notified someone has written to them.

We can all see everything that is being written and get pinged if there is direct reply.

[RosieRuggles in reply to pennyannie]

I have ordered the book. Thanks for the recommendation and thanks for the encouragement.

[pennyannie in reply to RosieRuggles]

Well, I was there once, and now much improved, try and give back when and where I can as i feel i owe Thyroid Uk and this forum so much :

[humanbean]

B12 779 (I have stopped the B12 Complex as this is over the range.)

Did you really mean to write B12 Complex or were you taking B Complex?

B Complex usually contains a whole range of B vitamins. For example, Thorne Research Basic B contains 10 B vitamins and other substances normally lumped in with the B vitamins.

It is a good idea to try and keep all the B vitamins at reasonable levels.

It is usually suggested that people take a good quality B Complex, and then take an extra Folate supplement and/or B12 supplement if the B Complex doesn't keep them at good levels. Once folate and B12 have been optimised then some people can give up the folate and/or B12 but continue with the B Complex to maintain their levels.

If relying on the B Complex leaves people with lowering levels of folate and/or B12 then, once those are optimised, they could add a maintenance dose of either to the B Complex.

I have problems maintaining my B12 and folate at a level that works for me with just a B Complex, so I take a B Complex every day, and additional B12 and folate three days a week.

But everyone would need to work out their maintenance dose for themselves.

I wish a testing company would come out with some decent test packages that tested all the B Vitamins, but as far as I know doing that is not currently possible, and even if it was I think it would be enormously expensive - perhaps around £1000+.

If you want more info on the B vitamins this website has some very interesting blog posts, mostly quite short :

hormonesmatter.com/

[RosieRuggles in reply to humanbean]

Hi humanbean, sorry - I have stopped taking Thorne Basic B as I have used it to improve my B12 level which has now gone over range. Thank you for clarifying what to do with the B vitamins. I will continue with methyl folate to try to get that at an optimal level then stop and maybe go back to Thorne Basic B , one every other day to see if that works as a maintenance dose.