Worried mother

[Jonnybravo77]

I desperately need help, my 25yr old son has been struggling for a year now, he tried levothyroxine for 10 months made him worse, we need to get him on Armour but cant find a way to get it except travel to usa, is there any other way? He cant live like this anymore and i am so worried .

[TiggerMe Ambassador]

If you could give more details of his levo trial and whether he got to a full replacement dose for his weight etc with blood test results we would be better able to help, NDT doesn't suit everyone it might just be he needed some T3 adding to his T4 which is available from the NHS

Was he also tested and advised to optimise his folate, B12, ferritin and Vit D levels?

[Jonnybravo77 in reply to TiggerMe]

He was was diagnosed hypothyroid in january tsh was 38 started on 50 mg then upped to 100mg, his bloodwork fine but no improvements in symptoms mainly fatigue, and he went from hypo to hyper, he stopped levo after 10 months his recent bloods show optimal t3 and t4, tsh 28.792 ml/Ul, he did try t3 alomg with levo, we have worked with herbalist trying to heal his gut and various diets and supplements to no avail.. he was fit and healthy before this playing sports, going gym and had his own business, been out of work for a year now in bed, his mental health suffering, spent a fortune on private endocronologists all telling him go back on levothyroxine, there has to be another way, levo improves bloods but not symptoms..

[Jaydee1507 Administrator in reply to Jonnybravo77]

Please quote exact blood results with reference range for each test. Ranges vary between labs.

Has he also tested key vitamins ferritin, folate, B12 & D3?

[Jonnybravo77 in reply to Jaydee1507]

Results

[Jaydee1507 Administrator in reply to Jonnybravo77]

These are not optimal blood results. What dose was he taking at the time?

Its important to take Levo on its own, on an empty stomach with nothing other than water for an hour after. Its a very fussy hormone.

[RedApple Administrator in reply to Jaydee1507]

 Jonnybravo77 I have removed all the images because they show your sons personal details (name, DOB etc)

Please do not keep uploading the image, type the results instead.

[Hashiboy in reply to Jonnybravo77]

Hi there, really sorry to hear about your sons’s struggle to recover. Can I just clarify? When you say his T3 and T4 is optimal do you mean that both are well within the normal reference range on at least two tests after being off levo for a good period of weeks? If so and he still has a very elevated TSH then you probably need to discuss with your GP as it’s a little unusual. Doctors often call high TSH and normal T4 sub clinical hypothyroidism, they often don’t treat til TSH is over 10. In your sons case he is a lot higher but his normal T4 might mean he doesn’t need a very big dose of levo. Be good if you could get a GP to discuss this.

my.clevelandclinic.org/heal...

[Jonnybravo77 in reply to Hashiboy]

Latest results

[Jonnybravo77 in reply to Jonnybravo77]

Latest results

[RedApple Administrator in reply to Jonnybravo77]

Jonnybravo77, Personal details are visible on those test results so I'm removing the image. I suggest you manually type the numbers here instead.

[SlowDragon Administrator]

Armour is extremely expensive and impossible to get on NHS

It’s possible to get prescribed privately

Many, many people find they do fine on levothyroxine if on HIGH ENOUGH dose

Plus essential to maintain optimal vitamin levels

Is his hypothyroidism autoimmune

How much levothyroxine was he taking

Which brand of levothyroxine

Once on high enough dose to bring Ft4 to top of range, and optimal vitamin levels……..if Ft3 remains low then it’s possible to get T3 (liothyronine) prescribed alongside levothyroxine

[Jonnybravo77 in reply to SlowDragon]

Thank you, he has no antibodies and no other symptoms of hypothyroidism except extreme fatigue, he was on 100 mg levothyroxine, bloods always came back normal but he felt worse inside..

[SlowDragon Administrator in reply to Jonnybravo77]

Can you add ACTUAL results and ranges

On Levo we need OPTIMAL levels…..not just something within range

100mcg is not a high dose, especially for a young chap

It’s essential to be on high enough dose

ALWAYS test early morning and last dose Levo 24 hours before test

Essential to test TSH, Ft4 and Ft3

Plus vitamin D, folate, B12 and ferritin

Were BOTH TPO and TG thyroid antibodies tested

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

But NHS won’t test TG antibodies unless TPO antibodies are high

So many people don’t get diagnosed

Would need to test privately

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

also many people find different brands of Levo are not interchangeable

[SlowDragon Administrator in reply to Jonnybravo77]

Did he have anything significant happen before become unwell

Head trauma

Glandular fever

Whiplash

Etc etc

Any autoimmune disease in close family

[Jonnybravo77 in reply to SlowDragon]

He had a hair transplant before any of these issues . No autoimmune disease in family and he had no antobodies..

[SlowDragon Administrator in reply to Jonnybravo77]

Presumably that requires immunosuppressant treatment?

royalfree.nhs.uk/patients-a....

In some people, immunotherapy can cause your immune system to attack normal tissues within your body, causing inflammation. When the thyroid is affected or inflamed it no longer functions properly.

[Jonnybravo77 in reply to SlowDragon]

Thank you i will look ok into this, i wasnt sure if hair transplant could be linked to his hypothyroidism..

[SlowDragon Administrator in reply to Jonnybravo77]

Looking possible

Come back with new post with results from when on 100mcg levothyroxine

[Sparklingsunshine in reply to Jonnybravo77]

Has he had covid. There is growing evidence that covid can disrupt the thyroid and whilst its often temporary in some it can lead to hypothyroid.

[Jonnybravo77 in reply to Sparklingsunshine]

Yes he had covid..

[Jonnybravo77 in reply to SlowDragon]

Thank you so much your comment has really helped us, i think hair transplant is root cause as his bloods show signs of infection and inflammation, he had no signs of hypothyroidism other than extreme fatigue, hopeful now we can get appropriate treatment in uk.. booking an appointment with immunotherapist, i feel we are on right path after crazy year 🙏

[SlowDragon Administrator in reply to Jonnybravo77]

What were his actual results

Covid would raise CRP test results

Covid has been a trigger for fatigue

And can cause low vitamin levels too

Have you got results for

TSH

Ft4

Ft3

Thyroid antibodies - ideally BOTH Tpo and TG antibodies

Vitamin D

Folate

B12

Ferritin

Testing early morning, ideally before 9am, last dose levothyroxine 24 hours before test

[RedApple Administrator]

Jonnybravo77, Are you in the UK?

Please do be aware that your post may elicit private (chat) messages to be sent to you, telling you of website/s where you can buy Armour without prescription. The chances are that any messages you receive will be from scammers.

We have a post explaining about the likelihood of being scammed when buying medications from websites. For the health of your bank balance, please do read our post and act on the advice it contains. healthunlocked.com/thyroidu...

[Jonnybravo77 in reply to RedApple]

Yes im in uk, thanks for advice..

[SlowDragon Administrator]

Guidelines of dose Levo by weight

approx how much does your son weigh in kilo

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)

cks.nice.org.uk/topics/hypo...

bnf.nice.org.uk/drugs/levot...

nhs.uk/medicines/levothyrox...

Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.

Some people need a bit less than guidelines, some a bit more

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

gponline.com/endocrinology-...

Graph showing median TSH in healthy population is 1-1.5

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

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

onlinelibrary.wiley.com/doi...

If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).

Shoe size analogy by @tattybogel

healthunlocked.com/thyroidu...

[Montheone]

Hi

I have been on Armour for 3 years but can’t afford it any more and tho felt fine on it - have had some odd blood test results and it didn’t help with losing weight which I thought the addition of T3 might - I was having problems with different brands of Levothyroxine when I chose to start using it but not a panacea

Armour is unlicensed and not recommended by NICE ( national institute for clinical excellence) as its safety and consistent dosage cannot be guaranteed.