A Worried Mum.

[Sheba678]

I am new here and would be grateful for any input.

I have Hashimoto's and have been on medication for about 15 years, currently taking a combination of T4 50mcg and T3 2.5 mcg, which I do well with. I have a strong family history, my maternal aunt had and my sister have Hashimoto's. For the longest time I have believed, from observation of symptoms, since childhood, that my adult son has Hashi's although blood tests reveal levels in the normal range with no presence of antibodies.

My son's symptoms include: cognitive problems, memory loss, depression, apathy, very high ferritin levels( haemochromotosis test negative) muscle and joint aches and pains, edema, hair loss, high cholesterol, metabolic syndrome, weight gain (despite a good diet) sleepiness, IBS, fatty liver, chronic fatigue, inability to tolerate exercise, and inability to tolerate any supplements except vitamin D. Many symptoms have progressively worsened.

Last year he had an Ultrasound that showed a "rough textured thyroid" which was otherwise normal. A London endocrinologist said his thyroid was "large" but tests and a scan showed normal results. An endocrinologist in the U.S on seeing the images said he has non serum positive Hashimoto's thyroiditis. That antibodies are present but there isn't an assay smart enough to detect them yet. He advised a TSH test every 3 months, no medication until the thyroid has stopped swinging to and fro and the TSH is around 5 and anti depressant when needed. Meanwhile the symptoms continue and we control as much as we can through diet and lifestyle, this does not appear to be enough.

In November his B12 levels were 361( reference range 187-883) and serum folate was 6.4 ( reference range 3.10-20.50). We are both heterozygous for the MTHFR gene.

Because of the autoimmune component it is crucial to get an accurate diagnosis so I did an ultrasound of my thyroid. The radiologist said if I had not told her I had Hashi's she would not have known and that my thyroid was" normal". She compared my images to that of my sons concluding both thyroids looked the same. The difference is I have antibodies. But our symptoms are very similar, particularly compared to the period before I was on medication

My questions:

1. Would a trial of medication be damaging and have adverse effects i.e. if he did not do well and had to stop, would the symptoms worsen. Would he be likely to develop nodules? How long can one go on a trial, bearing in mind we are all so different in our responses.

2. What would be the common side effects to look for on medication? I would try him on a combination as I am of T3 and T4.

I am aware Synthroid depletes the body of iron, B2 and calcium and increases the risk of osteoporosis.

3. Is it better to start medication if this is the early stages of Hashi's or wait . I have read that if there are antibodies even low numbers, treatment must start immediately, but this is not so in my sons case, but the symptoms are very prevalent. But is it better to focus solely on the autoimmune aspect ? we do focus heavily on gut health.

4. Are there any sources I can go to to find an endocrinologist that will accept there is a need for medication despite "normal" labs? we are currently in the London area but I will go anywhere to find the right person.

Thank you for taking the time to read this.

[MaisieGray]

It would be useful to have your son's age ie is he a child or an adult?

I'm afraid that on my iPad I can't read the tiny detail in the photo you have posted so can't comment on your notes. But I wanted to respond to the comment by your US Endo that being seronegative arises from an inadequate assaying. I have never heard that before myself, but can't follow his logic. Antibody levels can be detected at very low levels and certainly at levels that indicate someone being seropositive rather than simply having a "normal" low level of antibodies (a percentage of the euthyroid population can evidence low levels and be perfectly well), so it doesn't seem to follow that if your son has antibody levels indicative of having an autoimmune condition, they wouldn't be identified during testing. On the other hand, it is perfectly possible for someone to actually be seronegative and nevertheless have Hashimoto's; and it's estimated that it occurs in about 5% of people with the condition, so not high numbers but possible. This US study concluded "Patients with Hashimoto’s thyroiditis and positive thyroid antibodies were more likely to present with overt hypothyroidism and a larger thyroid. Patients with antibody-negative Hashimoto’s thyroiditis had a milder form of hypothyroidism at the time of diagnosis. This could represent an earlier stage of the disease or simply a less aggressive form of Hashimoto’s thyroiditis. This study suggests that treating patients with subclinical hypothyroidism and positive thyroid antibodies is important to prevent the development of overt hypothyroidism."

thyroid.org/wp-content/uplo...

[Sheba678 in reply to MaisieGray]

He is 29 years old.

Thanks for your response on what the US doc said. My research confirms what you have said regarding the US study. Im in a dilemma whether to medicate him with a starter dose for a short period e.g 7/10 days, and if it had to be stopped for some reason would there be damage to the thyroid.

In November 2018 ( tests done in London) the Anti TPO Antibodies were < 28

The Anti Thyroglobulin Antibodies were 26 u/ml the reference range = 0.00- 60.00 u/ml

In August 2018 ( tested in different clinic in London)

Thyroglobulin Antibody was <10 iu/ml reference range 0-115

TPO Antibodies were 30.8 iu/ml reference range 0-34

But he was at this time recovering from a severe viral illness so this result was probably not accurate.

[MaisieGray in reply to Sheba678]

Am using my PC now, so can see a little more of your son's results than when using my iPad. Speaking for myself, given that it's estimated that only 5% of Hashimito's suffers are seronegative, I don't see seronegative Hashimoto's everywhere; but clearly it is a possibility. However, as antibody levels wax and wane, the Ab tests you mention are too close together to definitively rule it out - your son might have been tested during a period of low autoimmune activity. As always in these situations, it's a pity he hasn't had more FT3 and FT4 tests to accompany the TSH, which would have given a more accurate indicator of what was going on thyroid-wise. That said, if he approaches it sensibly and steadily, he shouldn't come to harm trialling thyroid hormone replacement; but the corollary to that is that he could actually feel worse on too low an initial dose until he re-tests and adjusts dosage accordingly, or may not notice any benefit in only 7-10 days and stop too soon - I'm someone who can only assess progress by looking back over time. Does your son himself, want to try it out?

BTW regarding your statement that synthroid depletes iron etc, I'm not sure how accurate that is. My own situation is that I've not eaten meat for 50 years and have been taking levothyroxine for 40 of them, and I've never been iron anaemic or had dire levels. I did once read one comment by a US Naturopathic Dr about the association with iron depletion although without explanation why, so can't comment on its' veracity. However at the same time I read separately that it had been previously thought that the addition of levothyroxine and corresponding adjustment of TSH would improve anaemia, and this was now not believed to be so - so whether the addition of Levo not improving anaemia has been misinterpreted as Levo causing it, I don't know. It's certainly true that such as iron and calcium, can negatively effect absorption of thyroxine.

[Sheba678 in reply to MaisieGray]

Thanks for these helpful comments. I hope to get the thyroid panel tests redone again soon( and make sure he gets the FT3 and FT4) and then more regularly so we can build up a recent and better picture. I am still searching for a doctor to direct us on this. I feel it would be best if he is under supervision of a specialist as getting the correct dose is difficult. Hopefully we can find someone who really listens to his symptoms and see the whole picture, not just rely on labs.

[SeasideSusie Remembering]

Sheba678

Am I reading this correctly

Anti-thyroid antibodies <34 - presumably TPO antibodies?

Results:

27

17

30.8

If so then these results are too close to the limit to discount Hashi's completely, especially the last one. Maybe just not tested when they're over range. Also, apparently you can have Hashi's without raised antibodies.

His Vit D level has now come into the range recommended by the Vit D Society, ie 100-150nmol/L (40-60ng/ml). So maintaining this, or maybe nudging up a bit more, is the way to go.

I can't read the print on your second sheet even on my large PC monitor, it's too small.

Obviously B12 is too low. Have you checked signs and symptoms of B12 deficiency:

b12deficiency.info/signs-an...

I am aware Synthroid depletes the body of iron, B2 and calcium and increases the risk of osteoporosis

Does it? I've been taking synthetic Levo for 44 years, my calcium has always tested nicely within the normal range, I don't have osteoporosis, and my ferritin has been at the lower end of the range but if I eat iron rich foods it keeps it at a pretty good level.

[Sheba678 in reply to SeasideSusie]

Thanks for your response.

I cannot give any B12 supplement as he is unable to tolerate it, I have tried in the past with bad reactions. We focus on keeping up the levels through diet and its difficult to stay in the optimum range just doing this.

On the second sheet the tests were done in London;

August 2018

Thyroglobulin Antibody , 10 iu/ml range o-155

TPO antibodies 30.8 iu/ml range 0-34

These results may be inaccurate as he was recovering from a severe viral illness at this time.

We redid them in November 2018 after he had been steadily loosing a lot of hair .

Anti TPO antibodies < 28

Anti Thyroglobulin Antibodies 26 u/ml range 0.00- 60.00u/ml

Glad to hear your levels of nutrients are good. Like most things responses to medication is very individual. Currently I do not have the sources from whichI researched this on me otherwise I would have sent it.

[SlowDragon Administrator]

Email Dionne at Thyroid Uk for list of recommended thyroid specialists

[e-mail]

[Sheba678 in reply to SlowDragon]

Thvank you

[HLAB35]

Hi, am I reading the Ferritin as above range or,is that an error?

If so, it is somewhat unusual to have this unless he is supplementing.

Could be an iron loading disorder called haemochromatosis which is fairly common in Hashimoto's.. especially if there are liver problems too.

Lots of symptoms with it that may explain some of your son's problems.

There is a haemochromatosis charity in the UK and you could ask for advice. They will want him to have a full iron panel done, not just Ferritin. (High Ferritin can be down to inflammation in general.)

Will update with a link in a mo.. It is just a guess, but worth ruling out and not many doctors seem to be aware of it.

haemochromatosis.org.uk/hae...

haemochromatosis.org.uk/sup...

[HLAB35]

Sorry, just read the haemachromatosis test negative comment you made ... so the possible iron overload is not genetic??

The vitamin d may be helping because it pulls in calcium which is an iron agonist. Calcium rich food, plus quercetin may help with iron overload disorders.

Presumably though, it's still iron overload regardless of the cause (genetic or otherwise) and that'll cause very similar symptoms and the dangers associated with them.. It's a bit like the pituitary form of hypothyroidism (rather than Hashi's) will still bring about hypothyroid symptoms.

[Sheba678]

Thank you for your input. We include the calcium rich foods and also quite regularly black tea which binds iron.I thought the vitamin D also increases iron absorption ? but yes it does also enhance calcium uptake. I had not thought of this aspect !!

Thanks again.