Advice following endocrinology appointment

[Discodiva1]

Hello I posted recently as I have continued to feel unwell on Levo 100mcg daily. My Gp refused to consider a dose increase despite my symptoms: brain fog, fatigue, hair loss and constipation. I was therefore referred to an endo and saw him yesterday. He was empathetic but does not believe his patients benefit from T3 or there is research to support its use.

I explained my T3 and T4 were only 30 % through range and I would like to be considered for a dose increase of Levo or a trial of T3. He was reluctant to do either as my TSH is slightly below range. I live in Devon and he mentioned that he didn't want to start me on T3 as it might not be available in 6 months time on the NHS in my CCG.

I insisted on some form of treatment change and he prescribed 10 mcg of T3 daily and 50 mcg of Levothyroxine. I am interested on what your thoughts on the massive reduction in my levo by 50 %?

TSH 0.32 mIU/L (0.35-4.5 mIU/L)

Free T4 15.3 pmol/L (11-24 pmol/L)

Free T3 4.8 pmol/L(3.9-6.8 pmol/L)

B12 594 (180 -2000 ng /L )

Folate 13.1 (normal 3.1-18.3)

Ferritin 24 (13-150 ug/l)

Haemoglobin 114 (120 -150 g/L)

Haematocrit 0.344 (0.37-0.47 )

I am Gluten free since December and I weigh 89 kg so my dose based on weight of Levo would be 125mcg and 145mcg.......

Any help gratefully received. He also suggested I look at my stress and he agreed to test my Cortisol levels. I have had to go part time due to my symptoms and my partner left last year so now look after kids largely on my own whilst trying to run a house and a busy job on a cancer unit.

What do you think ?

[SlowDragon Ambassador]

Setting you up to fail spectacularly

Your levothyroxine needed increase FIRST. And absolutely not a dose reduction

And your ferritin is really terrible.

Are you vegetarian or vegan?

Ferritin needs improving to at least half way through range

Look at increasing iron rich foods in diet

No vitamin D result ?

[Discodiva1 in reply to SlowDragon]

Thanks Slow Dragon for your reply. Yes I am concerned about reducing the Levo thyroxine. I was vegetarian but have been on red meat and chicken and iron tablets since September particularly to try and improve my iron levels and Ferritin. Vitamin D not tested no.

It's difficult as work with him in the hospital and so I have to be careful how I approach things. He said none of his patients improve on T3 but I am not surprised if he takes away their Levothyroxine.

Cost to the NHS is always quoted regarding T3 but if I have to go off sick due to this then surely that will be more epensive ??

[SlowDragon Ambassador in reply to Discodiva1]

TSH likely low because of terrible ferritin

How old is this ferritin test result?

Obviously first step is to increase levothyroxine dose

And get vitamin D tested

Vitamin D NHS postal kit

vitamindtest.org.uk

[Discodiva1 in reply to SlowDragon]

My Ferritin was tested on 23/12/2020 and I agree it still needs to increase . The stupid thing is I meant to request an iron infusion when I saw him but brain fog got to me. My main focus was trying to get a medication change.

[SlowDragon Ambassador in reply to Discodiva1]

Rare to get iron infusion unless extremely anaemic

Suggest you read the many in depth replies by humanbean on low ferritin

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

Thyroid disease is as much about optimising vitamins as thyroid hormones

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin

healthunlocked.com/thyroidu...

Never supplement iron without doing full iron panel test for anaemia first

Post discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

How low ferritin can affect TSH and needs improving

healthunlocked.com/thyroidu...

Helpful post about iron supplements and testing

healthunlocked.com/thyroidu...

Post about iron supplements

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

[Discodiva1]

Yes I agree. I have a two month supply of Levo 100mcg and now a 2 month supply of 10mcg of T3. The reason he dropped my Levo dose was my low TSH and risk of Osteoporosis/ stroke etc..............I just want to be able to do the laundry and play with the kids !!!!!

[SlowDragon Ambassador in reply to Discodiva1]

healthunlocked.com/thyroidu...

the best paper on this that I have seen indicates that a TSH of 0.03-0.5 is best on therapy. Above that is insufficient and below MAY or MAY NOT indicate slight overdosing

academic.oup.com/jcem/artic...

Interestingly, patients with a serum TSH below the reference range, but not suppressed (0.04–0.4 mU/liter), had no increased risk of cardiovascular disease, dysrhythmias, or fractures. It is unfortunate that we did not have access to serum free T4 concentrations in these patients to ascertain whether they were above or within the laboratory reference range. However, our data indicate that it may be safe for patients to be on a dose of T4 that results in a low serum TSH concentration, as long as it is not suppressed at less than 0.03 mU/liter. Many patients report that they prefer such T4 doses (9, 10). Figure 2 indicates that the best outcomes appear to be associated with having a TSH within the lower end of the reference range.

Low TSH no heart issues

academic.oup.com/jcem/artic...

In summary, patients on long-term T4 with either an increased serum TSH (>4 mU/liter) or a suppressed TSH (<0.03 mU/liter) have an increased risk of cardiovascular disease, dysrhythmias, and fractures when compared with patients with a TSH within the laboratory reference range. Patients with a low, but not suppressed, TSH (0.04–0.4 mU/liter) had no increased risk of these outcomes in this study.

[shaws]

Many on this forum have found that Endocrinologists may not treat the symptoms but the blood tests alone and don't adjust dose.

Endocrinogists were told by the BTA to no longer prescribe T3 as its cost was increased so much that the NHS coudn't afford it. Besides, most endocrinologists do not believe that some people cannot improve their health and be symptom-free by other than levothyroxine.

I am sorry your home life has also caused stress and anxiety through no fault of your own.

As your B12 is in the lower part of the ranges, I'd ask to be checked for Pernicious Anaemia - another serious condition if not treated.

I think endocrinologist who have the same attitude as the one you saw, i.e. " was therefore referred to an endo and saw him yesterday. He was empathetic but does not believe his patients benefit from T3".

Let's begin by requesting him to have his thyroid gland removed!!!!

It's time to stop inventing 'fairy tales about T3'. We can live without T4 but not without T3. (some patients may not convert T4 into sufficient T3).

I would like to know how Endocrinologists would respond after we removed their thyroid glands.

[Discodiva1 in reply to shaws]

Thankyou Shaws

I think a few people in the hospital I work with had mentioned to him how much my health has fallen apart prior to my appointment. We agreed that I probably developed post partum thyroiditis and that I might have Coeliac disease looking at my iron status but as I am already gluten free that would be impossible to confirm.

I agree in order to feel empathy with their patients they need to experience what it is like with no thyroid function!!!!

[Miffie]

Sharp won’t inflict the pain and poor cut of blunt old paper scissors. You spoil him Hidden . I wouldn’t waste my good onex on him. I do have a rather dodgy serrated edge knife at the back of a kitchen drawer!

[diogenes Remembering]

Here is a British paper to educate your endocrinologist and doctor:

Clinical Endocrinology

Liothyronine use in a 17 year observational population‐based study ‐ the tears study

Graham P. Leese, Enrique Soto‐Pedre, Louise A. Donnelly

First published: 04 March 2016 doi.org/10.1111/cen.13052

It shows no harm for patients on T3 only over 17 years.

[Discodiva1 in reply to diogenes]

Thankyou Diogenes.......I worked at Ninewells for 3 years where this study was done and met Prof Leese when he gave us a lecture......maybe I need to move back to Scotland !!!!!

[Mazzer]

Hi Discodiva

Your post is interesting. I too live in Devon and am being given the run around with the Endos and the GP haggling over the cost of T 3. I’ve seen an e mail about the CCG “possibly” withdrawing it from the list at some point but frankly I think this is bollocks and a way to try to deter starting treatment. I have also seen evidence that Devon are restricting dosage to maximum of 10mcg. I think this may be open to challenge via the CCG.

Im new to the forum and don’t feel qualified to comment on your readings or doses but I would be keen to engage with you regarding your experience in the Devon system as I am dipping my toe into a political minefield at the moment. PM me if you like.

[Discodiva1 in reply to Mazzer]

Thanks Mazzer I will PM you at the weekend there is a Devon Thyroid Support group on Facebook which if you are not already a member covers the local CCG issues.

[Lotika]

Oh, poor you - what a rubbish endo. I had my T4 cut from 100 to 50 for 2 x 5 mcg T3, interestingly enough. I struggled a lot and my fT4 was considerably higher than yours to start with and my FT3 was considerably lower, so I think you may struggle on 50 mcg The T3 might still be good for you though. My experience (as a patient) suggests to me that there is something chicken and egg going on with vitamins and T3. I think that T3 seems to improve my ability to absorb vitamins from tablets and food, but I can’t say for sure as I went GF at around the same time, which, given the reduction in tummy pains, may well be the real reason. I do hope it works for you and that things start to improve.

Endo has now increased levo to 75 mcg and I still suspect it is too low, but I am only 3 weeks into the dose change, so time will tell.

[Discodiva1]

That's exactly what I am worried about Lokita. I am already struggling and cannot afford to function any less well than I do ( none of us can all of us on here just want to feel a bit better). This is interesting as I think you were put on exactly the same as I am being suggested as a trial 50mg Levo and 2 x 5mcg T3. I think slowdragon emphasising my low Ferritin is key as I need to focus on that. I am also gluten free