Asking for a friend ...

[UKmale_hypo]

Hi. I have been trying to help someone for about a year who is really struggling. She is 43 years old. She is he had pituitary surgery to remove an adenoma in July 2021. She also had abdominal surgery [hysterectomy, removal of 2 large ovarian cysts, and removal of some bowel] in September 2022.

She does have a history of depression for maybe a decade, but her mental health has got a lot worse since the pituitary surgery, and she is now often suicidal and very desperate. She is really clinging on, and has taken at least one overdose.

I've suspected growth hormone deficiency (GHD) but also her thyroid results are very suspicious for central hypothyroidism (CeH), with low range FT4, low TSH, and hypothyroid symptoms.

My view is that she has had CeH for years, and then GHD since the surgery. She also has diabetes insipidus and secondary adrenal insufficiency since the pituitary surgery, so it clearly did cause pituitary damage. She recently had a GH stim test but the results were inconclusive.

She has shared her hospital notes with me, and also her recent results from Medichecks. She saw an endo privately who confidently said she has hypothyroidism, and she has been started on 50mcg of Levo just after doing the medichecks testing.

There are lots of questions!

The thyroid results from the medichecks tests on 17th May 2023 are confusing and not consistent with the previous NHS results. The medichecks FT4 is VERY much higher, and I suspect this must be incorrect for some reason. I wonder if there are reasons why this could be? There are more recent thyroid results from March this year after she got her hospital notes that are similar to the previous NHS test results: TSH=0.51 with FT4 of 12.5

Then there are the Ferritin, Folate, vitamin B12, and vitamin D results. Vitamin D seems reasonable, but Folate is very low, and B12 and Ferritin are scraping into the bottom of range. From what I've heard this isn't good enough, but I'm no expert and actually waiting for my own test results on these right now!

I am wondering what to suggest to her, especially regarding the low Folate, B12 and Ferritin. I am also wondering if there might be any connection with the hysterectomy in terms of the low Folate? (I am completely ignorant in this regard).

All advice gratefully received. TIA

[UKmale_hypo]

These are the NHS test results ...

NHS test results

[SlowDragon Administrator in reply to UKmale_hypo]

ferritin

cks.nice.org.uk/topics/anae...

Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron 

Medichecks iron panel test 

medichecks.com/products/iro...

Look at increasing iron rich foods in diet 

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

An article that explains why Low ferritin and low thyroid levels are often linked 

preventmiscarriage.com/iron...

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.

healthunlocked.com/thyroidu...

Effective supplement 

healthunlocked.com/thyroidu...

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...

Iron and thyroid link

healthunlocked.com/thyroidu...

Excellent article on iron and thyroid 

cambridge.org/core/journals...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

Good iron but low ferritin 

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Shellfish and Mussels are excellent source of iron 

healthline.com/nutrition/he...

Heme iron v non heme

hsph.harvard.edu/nutritions...

Ferritin over 100 to alleviate symptoms 

healthunlocked.com/thyroidu...

Great research article discussing similar…..ferritin over 100 often necessary 

ncbi.nlm.nih.gov/pmc/articl...

Low Iron implicated in hypothyroidism 

healthunlocked.com/thyroidu...

Ferritin range on Medichecks 

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes: 

Males 16-60: 30-400 ug/L

Female's: 16-60: 30-150

Both >60: 30-650 

The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘

[SlowDragon Administrator]

Being hypothyroid will almost inevitably result in low vitamin levels due to low stomach acid and poor gut function

Her ferritin is deficient

Request FULL iron panel test for anaemia via GP

B12 is extremely low/deficient

Active B12 below 70 requires investigation

Is she vegetarian or vegan

She needs testing for Pernicious Anaemia BEFORE starting probably on LOADING B12 injections (regular B12 injections every 2-3 days until symptoms improve, then repeat injection every 2-3 months)

Alternatively on daily B12 supplements

But with B12 that low injections most likely

Folate is deficient

HOWEVER she must NOT start any folic acid or folate until at least week or two after starting B12 injections (or supplements)

Note that improving folate when B12 is very low is not a good idea.

Taking folate before B12 is good enough can lead to severe neurological problems.

en.wikipedia.org/wiki/Subac...

It is vital if intending to supplement both B12 and folate that B12 is started a week before the folate.

Vitamin D is reasonable

Might be better around 100nmol

Is she currently supplementing vitamin D?

[headinjuryhypo in reply to SlowDragon]

Can I reply on behalf of UKmale-hypo as we are both involved with this lady. We do appreciate all this useful information. I can tell you that she is not vegetarian or vegan. I am not sure if she is taking vitamin D but have asked her.

[SlowDragon Administrator in reply to headinjuryhypo]

Being hypothyroid will result in low stomach acid and then poor nutrient absorption…results in low vitamin levels regardless of how good your diet may be

Anaesthetic can lower B12

B12 is EXTREMELY Low…..possible exacerbated by bowel operation

She’s highly likely to need B12 injections

Marz may pop along and comment on bowel operation and low B12

[headinjuryhypo in reply to SlowDragon]

That's interesting, I didn't know about anaesthetic lowering B12

[SlowDragon Administrator in reply to headinjuryhypo]

b12-vitamin.com/anesthesia/

pubs.asahq.org/anesthesiolo...

pubmed.ncbi.nlm.nih.gov/825....

[Marz in reply to headinjuryhypo]

B12 is metabolised in the Terminal Ileum and then returns to the liver and is re-cycled.

I had extensive surgeries for Gut TB and Crohns. I inject B12 weekly and take a good B Complex to keep all the B vitamins in balance ...

[headinjuryhypo in reply to headinjuryhypo]

She is not taking vitamin D

[SlowDragon Administrator]

She will need thyroid levels retested 6-8 weeks after each dose increase in levothyroxine

Which brand of levothyroxine is she currently taking

ALWAYS test thyroid early morning, ideally just before 9am and last dose levothyroxine 24 hours before test

Was this Medichecks test BEFORE starting on levothyroxine or after?

For good conversion of Ft4 to Ft3 it’s essential we have optimal vitamin levels

[headinjuryhypo in reply to SlowDragon]

The Medichecks test was before she started taking the levo.

[headinjuryhypo in reply to headinjuryhypo]

Her levothyroxene says 'Accord' on the box - presume this is the brand

[SlowDragon Administrator in reply to headinjuryhypo]

yes it is

Accord make 50mcg and 100mcg tablets

[ColdBanana]

Liver once a week in my opinion is good for everyone if the taste is good; especially more so with her lower iron levels. Vitamin D could be a little higher. Check temperatures before & after breakfast to make sure she isn't still hypo -- i personally would never go by blood alone if she is still symptomatic... But the lower ferritin wont be helping

[Andie222 in reply to ColdBanana]

Hello. Please can you explain this temperature comment a little more. Why before and after breakfast? What result would suggest she is still hypo? (I assume you mean undermedicated,). Thanks.

[ColdBanana in reply to Andie222]

Hypo people tend to run on adrenaline if they are not medicated, which can make the body temperature appear normal when it isn't; it usually comes down after breakfast when the stress hormones are lowered due to eating. So before and after gives you an idea of what the body temperature is without the influence of stress

[greygoose]

Were all these tests done at the same time of day? The time of day affects the TSH level. How long was the gap between her last dose of levo and the blood draw each time. Unless tests are done under exactly the same circumstances, you cannot compare them. And, if for the Medichecks test she took her levo too close to the blood draw, that would explain why it is higher than the other tests.

Has she had her cortisol tested? If she has a pituitary problem, that will probably be low, too, and that will also cause symptoms.

[headinjuryhypo in reply to greygoose]

Yes she does have low cortisol and is being treated for that. I don't know about the time of day. However all these tests were done before she started levo.

[greygoose in reply to headinjuryhypo]

How are they treating the low cortisol?

You still didn't say if all her tests were done at the same time of day - if so, what time? If they weren't, then you can't compare them.

In any case, I wouldn't worry about one test that didn't correspond to the others. These things happen, and we can't explain everything because knowledge of the endocrine system is very limited. The important question is: is she feeling better now that she's taking levo?

As for the Human Growth Hormone, have they tested her IGF1? That is the usual test for HGH. But, it wouldn't be at all surprising if her HGH was low because lots of hypos have that. I had low HGH and I don't have a pituitary problem, just Hashi's. But, the problem is that you need good levels of T3 for the pituitary to produce HGH. And, you need good levels of HGH to convert T4 to T3. And they don't even test the wretched FT3! Pretty certain they have very little idea what they're doing.

[headinjuryhypo in reply to greygoose]

No, she says she doesn't feel any better. She's been taking levo for 24 days now.

[headinjuryhypo in reply to greygoose]

Re time of day I know her most recent tests (the Medicheck) were done at 9 am and that she fasted beforehand. However it isn't the TSH which is perplexing us, but the fT4, which is unexpectedly high after being low before. I understand from Slow Dragon's info that the time of day isn't crucial to fT4 and fT3 levels.

I agree so much with your view of 'them'! It's so good that we have Thyroid UK to go to when we're baffled.

Re IGF-1 levels, yes, she's had those tested and they are normal. But as the guidance on diagnosing GHD says “A normal IGF-1 level does not rule out GHD at any age.” (see below) We feel almost sure she has GHD because of her pituitary surgery and the fact that she has 3 other pituitary deficits, which practically guarantees it. There's even research saying testing for GHD isn't needed if there are 3 or more pituitary deficiencies! However a GHRH + arginine test came back normal, though there was some doubt over her BMI at the time.

[Consensus guidelines for the diagnosis and treatment of adults with GH deficiency II: a statement of the GH Research Society in association with the European Society for Pediatric Endocrinology, Lawson Wilkins, European Society of Endocrinology, Japan Endocrine Society and Endocrine Society of Australia, 2007. “A normal IGF-1 level does not rule out GHD at any age.”

eje.bioscientifica.com/view...]

[greygoose in reply to headinjuryhypo]

So, why aren't they giving her HGH injections?

[headinjuryhypo in reply to greygoose]

Because of the 'normal' GHRH+arginine test. She did have them but they were stopped after only a few weeks, when she was transferred back to her local care after the surgery. Actually I suspect it was cost-cutting. We had a case with our charity, where a doctor in N. Ireland refused to test a patient for GHD even when we offered to pay privately. 'More fruitful to go down the mental health route' he said, even though this poor man had been treated for mental health issues for about 2 decades without improvement! When we paid for private testing in England he was shown to be severely GH deficient, so clearly the N. Ireland doctor suspected he had it and just didn't want to find it.

[greygoose in reply to headinjuryhypo]

Yes, it certainly is expensive! But, if the patient needs it, then the patient should get it. And, it's certain that low HGH is going to cause a lot of health problems, and will slowly kill her. You can't live without it. Is she in a position to pay for it herself?

[headinjuryhypo in reply to greygoose]

I don't get the impression that she's very well off. Yes, I agree with you that undiagnosed GHD causes terrible health problems, and is actually far more expensive in that way, than it would have cost to treat. It costs £16,000 to put 6 stents into a person and keep them in hospital for 10 days - as you know, GHD causes cardiovascular problems - and 'only' £966 a year to give them growth hormone. (I got this price recently from NHS England.) However, private clinics charge about £11,000 to give people GH so I don't think this patient could manage that.

[greygoose in reply to headinjuryhypo]

No, it is expensive, I know. And, it's not something you can self-treat with. But, what can you expect from a health system that turns itself inside-out denying us T3! I have the impression they just don't want us to get well. Has she tried alternative doctors, such as holistic doctors or naturopathic doctors?

[headinjuryhypo in reply to greygoose]

No, she hasn't done that. Yes, the T3 situation is pretty scandalous.

[greygoose in reply to headinjuryhypo]

I got the best care I've ever had from an Anti-Aging doctor. They tend to know hormones better than endos. But you have to chose your AA doctor wisely, they are not all created equal!

[JAmanda]

from those results, I’d focus on improving the folate and b12 levels.

[headinjuryhypo in reply to JAmanda]

Thanks. Sorry to be late saying thank you! Yes, we are trying to do that.

[Batty1]

Is your friend on HRT after the hysterectomy?

[headinjuryhypo in reply to Batty1]

Yes she has HRT patches 150mg, changes every 3 days

[headinjuryhypo in reply to headinjuryhypo]

Plus 1 pump of testosterone twice a week