Thyroid disease starting as a young teenager and do I need to worry about my younger sister?

[liaratsoni]

Hi everyone!

I was looking back at my medical record and had some questions out of curiosity. I was diagnosed with secondary hypothyroidism - T4 at bottom of range, T3 below range and TSH 1.8 and no antibodies. However my endocrinologist has also since mentioned possible hashimotos - he said a percentage don't have antibodies and I have since been told by knowledgeable people on here that sometimes you can have a disregulated TSH. Looking back my TSH fluctuated over the years - it was 3.1 in 2017 (when I had awful feritin and b12 deficiency and I began to lose my periods) and was also 2.9 and 2.5 at other points - it was 2.5 at 2014 in the first time it was ever recorded when I was 16. Am I right in believing in some countries over 2 is considered possible hypothyroidism? I also already had extremely low ferritin and pcos - ferritin never went above 24 since first being recorded at a level of 14 at the age of 16 but has since climbed to 89 for the first time EVER since being on thyroid medication. I feel like this would appear to show that I was already a degree of hypothyroid at the age of 16 which seems very young? Is it unusual to be hypothyroid so young - my endocrinologist said he thinks it started when I was a young teenager the first time I saw him because of how low my levels were.

I am mostly just curious but also I have a younger sister and I am aware that hashimotos runs in families and that it is very common in women and that me having it would put her at a much higher risk. As I said I don't know if I have hashimotos but my grandma on my dads side had thryoid disease - my dad doesn't but again I know its much more likely to effect women. As such do you think it's worth monitoring my sister? I don't want her to ever go through what I have been through and our doctors are absolutely useless. Would it be worth just keeping an eye on her levels?

Huge thanks!

[greygoose]

It's true that 20% of Hashi's people never have raised antibodies. But, if your TSH was only 1.8 with such low Frees, then it sounds far more likely that you have Central Hypo. Did they not do any further testing - adrenals, etc. - to verify or discount CH?

I believe, and one doctor has confirmed, that I became hypo at about 8 years old. And, quite a few people on here would also say that they became hypo at a very early age. It can happen at any time, depending on what causes it. There is no norm, I don't think.

[liaratsoni in reply to greygoose]

Ah thank you thats very interesting to know - I had always assumed hypothyrodism came on later but clearly not the case! They did test all the other pituitary hormones and all were fine - I am more inclined to believe I have secondary aswell though it also seems a bit of a strange coincidence that my grandma had thyroid disease too

[greygoose in reply to liaratsoni]

It's just a pity that they no-longer test the hypothalamus hormone, too: TRH. The problem could come from the hypothalamus, which stimulates the pituitary to release TSH.

However, all that is academic so long as they are treating you, and not dosing by the TSH. There's not much you can do to 'cure' hypothyroidism whether it's caused by Hashi's or pituitary failure. You just have to replace the missing hormones.

[liaratsoni in reply to greygoose]

Very true! Its my curiosity! At the end of the day though I am just very glad I am getting treated!

[Marymary7 in reply to greygoose]

Agree. I was five or six when I had my tonsils out, I have read there could be a connection? Could be when some folk start to suffer. Also they say fasting can trigger it I believe. I had really bad influenza as a young child and stopped eating after I just sat there, couldn't do anything, the doctor diagnosed acute depression, I can remember it although I was young. My young brothers had to stay home ( off school so Mum could work) with me and try to make me eat oxtail soup!

[greygoose in reply to Marymary7]

I was four when I had my tonsils out. Some say there's a connection. Some say there isn't. I don't know who's right. I had every infection going, when I was a child - except mumps, despite playing with the boy next door when he had them. And, there is a connection between having your tonsils out and picking up infections. So, maybe one thing just leads to another.

[humanbean]

Central/secondary/tertiary hypothyroidism is caused by a problem with the pituitary, or occasionally with the hypothalamus. You might have a perfectly healthy thyroid, but it simply isn't getting the correct instructions from your pituitary, which responds to hormones produced by the hypothalamus and produces TSH in response.

Central hypothyroidism means that either your pituitary or your hypothalamus isn't doing what it should.

The causes of this condition could date back to birth, or trauma (e.g. whiplash or a head injury), or a catastrophic bleed during childbirth (Sheehan's Syndrome), or a tumour or some other kind of disease.

It would be worth your sister getting her thyroid tested once a year or every couple of years, or if she feels that her health is deteriorating.

The kind of test she needs would be something like this :

medichecks.com/products/thy...

If her nutrients started dropping then that can be a sign of a thyroid in trouble. If she developed thyroid antibodies that would be worth knowing and another early warning sign. And of course, the TSH rising and/or the thyroid hormone levels dropping would be another sign.

[liaratsoni in reply to humanbean]

Thank you! Yes that's what I was thinking a yearly/every 2 years test if she starts exhibiting any symptoms - I actually discovered my own problem with that medichecks test too! I definitely want to keep an eye on her as mine crept up on me over many years but I know the signs now and hopefully if it did become a problem we can catch it earlier for her!

[Scruffy1941]

I was diagnosed with an underactive thyroid at the age of 11 when I started to get a goitre. At the age of 19 I had most of my thyroid removed and have been on Levothyroxine since , now on 150 mg daily. My readings do alter then the level of medication is changed. I am now 73 and have always had trouble with my weight and thinning hair.

[liaratsoni in reply to Scruffy1941]

Thank you for the reply - it is very helpful and I am sorry to hear you have had it since such a young age!

[SlowDragon Administrator]

Definitely get her full thyroid and vitamin testing via Medichecks annually

[liaratsoni in reply to SlowDragon]

Thank you slowdragon! Actually just got off the phone with my aunt who I haven't spoken to since I was a child and found out my nan, nan's sister and my cousin all have underactive thyroid so all female relatives bar 1 who has no issues but an irregular shaped thyroid. Definitely going to monitor her now.

[SlowDragon Administrator in reply to liaratsoni]

Have you done Dio2 gene test for yourself?

If her antibodies are negative...perhaps you all have Dio2 gene variation

[liaratsoni in reply to SlowDragon]

I haven't - I have heard of the Dio2 gene but didn't know it was a variation of thryoid disease!

[SlowDragon Administrator in reply to liaratsoni]

many of us that do better on small dose of T3 alongside levothyroxine have this common Gene variation

Obviously being genetic it gets passed down generations

Not available on NHS (apart from one endo in Kent)

thyroiduk.org/getting-a-dia...

To explain this paper briefly, the DIO2 gene activates triiodothyronine (T3) and the researchers found that a tiny change in this gene could mean that although the body gets enough T3, the brain doesn’t.

The patients on this study were given levothyroxine only for a set period and then combination treatment of both levothyroxine and liothyronine (synthetic T3). The patients who had normal genes did not feel any different on combination treatment. However, those who had one variant gene (inherited from one of their parents) felt better on the combination treatment and those with two variant genes (inherited from both parents) felt better still.

This means that there is a possibility that patients who are on levothyroxine alone, still have symptoms and have the variant DIO2 gene may improve with the addition of liothyronine.

Because this gene causes a deficiency of T3 within the cells, the usual thyroid hormone function tests will not show up a problem. This means that your TSH, FT4 and FT3 blood tests will look normal.

[liaratsoni in reply to SlowDragon]

Ah that is interesting! I do definitely seem to need T3 though it looks like at a slightly higher t3 ratio as I am currently on 87.5mcg t4 and 75% through t4 range but only 43% through t3 range on 10mcg t3 so am in process of increasing to 15mcg on endos advice. I believe my cousin with it was discovered with a high TSH and is normal now on levothyroxine but of course this was what my aunt said so no idea how she actually herself feels.

[6957]

Hi, liaratsoni, I have hashimotos, my oldest sister has hypothyroidism, one of my sister's daughter has hashimotos, so I would say it sorta run in my family, I would say to you, keep your sister in mind, if she starts complaining of low energy, fatigue, take her to the Dr, also if you and your sister can get a very good B complex with selenium, that's food for the thyroid. Drink coconut drinks, also very good for the thyroid. Eat foods that are nutrients for the thyroid, . I'm one of the few that do not respond well to thyroid meds, so I have to try other natural approaches. With the meds I experience palpitations, shortness of breath, diarrhea, nausea, itchy eyes, so I can't take thyroid meds.