Hi, its me again for what looks like the last time. Looks like I am now classed as borderline and Endo refuses to treat

[maplewood]

Latest bloods done this time by my GP TSH 5.0 range (0.35 - 4.7) T4 8.5 range (7.8-21.0). So i got a message from the GP secretary yesterday to say the Endo has seen my results and says my symptoms are due to the menopause not thyroid. He is not prepared to treat me and quite honestly I think the GP and him have now written me off and i don't suppose they will do any more bloods to check thyroid. I feel so much better off the medication and the plan was to trial me on T3 but now looks like that will not happen. GP refuses to test vitamin levels and quite honestly i can not afford to do any more bloods at the moment. Shall i just consider myself cured? I find it confusing to say the least that i have been taking meds for ten years and complained the full time of awful symptoms to be taken off meds after all that time. Does this mean i did not need the medication all that time. Any thoughts anyone? One Endo once said she thought I had initially had an infection? really do not know what to think anymore. Thanks all x

[greygoose]

So, were those labs don't when you were off levo? How long had you been off it?

I find it confusing to say the least that i have been taking meds for ten years and complained the full time of awful symptoms to be taken off meds after all that time. Does this mean i did not need the medication all that time.

No, it doesn't mean that. It means one of two things - or both of them: a) the fillers in the tablets you were taking didn't agree with you, so of course you would feel better when you stopped taking them b) it's a well-known phenomena that stopping thyroid hormone replacement will initially make you feel better than you have for a long time. But, it will not last. Sooner or later, hypo symptoms will come creeping back in.

Because you are hypo - never mind this nonsense about being 'borderline', that's just an excuse not to treat you, because doctors - both GPs and endos - hate treating hypothyroidism. Probably because they know they're totally out of their depth.

A totally 'normal' (euthyroid) TSH is around 1; never over 2; and you're hypo when your TSH reaches 3. So, you are hypo. And, your FT4 is very low, only 4.55% through the range! Euthyroid would be around 50%, so if that's not hypo, I don't know what is. That endo is a very ignorant man who shouldn't be treating thyroid patients. Of course you would have symptoms with levels like that.

[maplewood in reply to greygoose]

I stopped levo on the 10th March this year?

[greygoose in reply to maplewood]

OK, so the labs should be accurate. So, you really are hypo, it's just that the stupid NHS likes it to get to over 10 before it will admit you're hypo!

[maplewood in reply to greygoose]

That's what he said before get it to 10 but in 2013 my TSH was 12 and i was diagnosed then. Its just because I complained the meds did not agree and he doesn't want to give me T3

[greygoose in reply to maplewood]

Have you considered buying your own T3?

[maplewood in reply to greygoose]

More like a human rights lawyer, not sure I could afford it tbh and a scary prospect thinking i would be taking something and not been monitored in any way. I am also concerned that on the same set of bloods my cholesterol read 6.4 and haemoglobin a1c was 42. Never been higher then 37 previously. Both marked as borderline to be expected on remarks from hospital. If it is to be expected why is that then? , because they are more or less contradicting themselves there admitting there is a problem .

[greygoose in reply to maplewood]

Well, it may be scary at first, but many of us do it.

I don't know about the haemoglobin but your cholesterol is high because your FT3 is too low.

[Beau55]

hi maple wood,

I am sure you will get some more detailed scientific responses from other members but I just thought I would add my experience. I had to come off my NDT for 8 weeks for testing and my response confused me massively. The first couple of weeks I felt really, really good and started to doubt whether I had been taking the NDT needlessly. After a couple of weeks to a month, I gradually started getting worse and went downhill. How long have you been off your meds?

I’m not sure of the science but believe I’ve seen other members say that it is quite well known that people feel really well off their meds initially before crashing. I do have to say a TSH of 5 is not ‘borderline’ it means your thyroid is struggling a lot. A normal healthy persons TSH would never reach that level. Your T4 is getting very close to the bottom of the range also. I think over time you may find symptoms get worse but I suppose it’s all how you feel? X

[SlowDragon Administrator]

Previous posts 

healthunlocked.com/thyroidu...

currently taking 75mg levothyroxine liquid. 

latest bloods show 

TSH 4.5 ref range 0.35 to 4,7. 

T4 is 9.5 ref range 7.8 to 21.0. 2

2 years ago on 75mcg levothyroxine 

Clearly not on high enough dose levothyroxine and terrible vitamin levels 

healthunlocked.com/thyroidu...

A Year ago on 100mcg Levothyroxine 

Hashimoto’s and wheat intolerant 

healthunlocked.com/thyroidu...

bloods done on 9th september. 

TSH 3.92 range 0.27 to 4.2, 

free t3 4.46 range 3.1 to 6.8, 

Ft4 11.7 range 12 to 22

Results year ago on 100mcg showed not on high enough dose levothyroxine 

Dose levothyroxine should have been increased by 25mcg to 125mcg daily after these results 

As you were on liquid levothyroxine did you split your dose ….taking half daily dose waking and half afternoon or bedtime 

The aim of levothyroxine is to increase the dose levothyroxine up until TSH is always under 2 

Most important results are always Ft3 followed by Ft4 

On just levothyroxine Ft3 at least 50-60% through range and usually Ft4 will need to be a little higher….eg 60-70% through range 

Typical daily dose levothyroxine is 1.6mcg levothyroxine per kilo of your weight 

Approx how much do you weigh in kilo ?

Have you had vitamin levels retested since stopping levothyroxine 

Likely to find vitamin levels will get worse as you become more and more hypothyroid 

Low vitamin levels tend to lower TSH

[SlowDragon Administrator]

If you couldn’t tolerate increasing levothyroxine over 100mcg then small dose T3 should have been prescribed alongside levothyroxine

Starting on 5mcg T3 initially and adding 2nd 5mcg dose mid-late afternoon after 2-3 weeks

Bloods retested 6-8 weeks later (last dose levothyroxine 24 hours before test, last 5mcg dose T3 max of 12 hours before test…..so 2nd dose moved to 9pm night before test)

If results showed Ft3 was still too low adding 3rd 5mcg dose at bedtime

Retest again in 6-8 weeks

As you are wheat intolerant you were highly likely always going to need addition of T3 prescribed alongside levothyroxine

[SlowDragon Administrator]

Most endocrinologists are diabetes specialists and useless for thyroid

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

[e-mail]

Roughly where in U.K. are you

[maplewood in reply to SlowDragon]

yorkshire

[Regenallotment]

I really feel for you, this is so trying isn’t it. My GP had a similar response when I first tested at 4.8 they wanted to watch and wait, 12 weeks later it was 5.5 and I could hardly get out of bed.

I was however able to convince them to start me on Levo and up my dose from 25 to 50 to 75 and latest 100mcg. They had wanted to leave me on 25mcg indefinitely but thankfully this forum educated me otherwise.

I convinced them by sharing the info from SlowDragon and SeasideSusie , I copied and pasted (into a word document) the NICE guidelines and the GP online links about treating until the patient feels well, rather than looking at outdated and unhelpful TSH numbers. The surgery must have shared the info because all doctors I’ve spoken to since haven’t argued and have granted my ‘reasonable requests’ to trial an increase.

I read today on the Dr Sarah Myhill website that Dr Tofts also suggests that leaving ‘borderline’ or sub clinical cases untreated is also cause for concern further down the line, better to treat early than worse symptoms later.

If you can, gather your strength, put your emotional armour on and go advocate for yourself at the surgery. The endo is out of date and you can present the GP with evidence as to why you need to be treated.

Careful with re-introduction, you’ll have to take it slow and steady.

Wishing you well 🦋💚🦋

[SlowDragon Administrator]

here’s guidelines on dose levothyroxine by weight

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine: 

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months. 

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range. 

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

Comprehensive list of references for needing LOW TSH on levothyroxine 

healthunlocked.com/thyroidu....

TSH should be under 2 as an absolute maximum when on levothyroxine 

gponline.com/endocrinology-...

NHS England Liothyronine guidelines July 2019

 

sps.nhs.uk/wp-content/uploa...

Page 9 

Test for Deficiency of any of the following: Vitamin B12, Folate,  Vitamin D, Iron

See page 13 

1. Where symptoms of hypothyroidism persist despite optimal dosage with levothyroxine. (TSH 0.4-1.5mU/L)

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Aim is to bring a TSH under 2.5 

UK guidance suggests aiming for a TSH of 0.5–2.5

gp-update.co.uk/SM4/Mutable...

Persevere - have all guidelines printed and be ready to quote them 

healthunlocked.com/thyroidu...

Starting levothyroxine - flow chart 

gps.northcentrallondonccg.n...

[Hidden]

You can buy T3 from Europe at a relatively low cost, pence instead of pounds. You can test privately through Monitor My Health. You can private message me if you want.

[arTistapple]

My very first test showed ‘sub clinical’. This was twenty one years ago and a heart attack twenty years ago. I now realise that this was because they would not (or maybe just did not have the wit) to treat me. I had struggled many years before that, reporting symptoms that did not attract any attention. Many people on this forum report similar. Sometimes I feel very bitter about years lost, career dashed, allowed myself to be treated for illnesses I never had, cost the NHS a fortune because of ignorant GPs and consultants from other specialisms. You must either find a practitioner who will help you or learn to self medicate. Best wishes.

[maplewood in reply to arTistapple]

Thank you, yes you are right. I feel the same as you. I do try not to feel bitter but agree workwise it has left me doing jobs that are below my capability because of ill health.