I'm new to the forum but it looked like a good place to seek some sensible advice!
The story is that my Sister, Dad and Dad's two Sisters all have Hypothyroidism and are treated with Levothyroxine. After my Sister was diagnosed my GP suggested I have an annual blood test to monitor my thyroid (we are both now in our mid 30's). That was about 5 years ago and the other three family members have been diagnosed since then.
I wondered if anyone has experience of several families members having the same condition as I'm trying to understand the potential for me to develop it also?
To date my blood tests (they only do TSH) have been within the "normal" range (0.35 - 4.84 miu/L). In 2020 it was 2.01 and then last week when I had my annual check it was 2.62. I have always had vague mild symptoms that may or may not be associated (chronically dry skin, slow tummy, heavy periods etc.) but in the last year I have developed Melasma. As I am neither on the pill nor pregnant, my GP thinks it may be associated with my thyroid and has upped my blood tests to be six monthly rather than annually. I wondered if anyone else has experienced Melasma and if this is truly associated with the thyroid?
Thank you for your time, even with three family members with the condition I am still learning a lot and figuring out if it is something that may or may not be in my future.
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woodlandrose
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For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels tend to lower TSH
Heavy periods are extremely common hypothyroid symptom. Will lead to low ferritin levels
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Thank you ever so much for this, I really appreciate the information and the links, I will look into the tests now, I didn't know you could even do that!
The above graph shows the most common levels of TSH in healthy people.
as you can see 'over 3' is much less common than '1'.
so your 2/2.62 is already a little higher than the majority.
However TSH does not stay static. it moves up and down between the high point (middle of the night) and the low point (early afternoon) each day.... and also each month in time with menstrual cycle.
If there is a developing problem with the thyroid, you would expect to see the level of TSH rising over time. this is easier to spot if the tests are all done at the same time of day. (first thing in the morning , before 9am is recommended, to get the highest possible level in the day... means people get diagnosed sooner)
So for example if your '2' was done at 1.30 pm and your '2.62' was done at 8.30am. then it might not actually be a rise in real terms.
But if over time you did see each one really rising , then it is a sign of the thyroid beginning to struggle. because TSH (thyroid stimulating hormone) is a signal from the pituitary to the thyroid asking for more thyroid hormone to be made. if the thyroid is unable to make enough the TSH stays raised and continues to raise further.
If the thyroid is able to produce more thyroid hormone (T4/T3), then the TSH will go down again.
The most common reason for thyroid to become unable to produce enough T4/3 is autoimmune damage to the thyroid gland . ie. your own immune system mistakenly attacks bits of it .
So part of the reason for the doc asking for 6 month observations is because he's seen the rise from 2-2.62 and want to see if it continues, or goes back down. (most GP's may be unaware that TSH has a daily rhythm, they don't learn much about it)
As for the 'heridity' bit...( assuming the other members have autoimmune hypothyroidism), well yes, it makes it more likely that you will, but it's equally possible that you won't.
Nobody knows why some do and some don't. Certain triggers seen common . . pregnancy often kicks it off , stopping smoking can kick it off(or at least 'unmask ' it), possibly getting certain viruses can kick it off. In Graves disease (which is autoimmune HypERthyroidism) , extreme stress seems to be able to kick it off.
My mums sister had Graves aged 21(after a baby, i think) .. my mum had nothing ,.... i have autoimmune hypo that started after a my 2nd baby ,aged 32. my brother has nothing , but it's much less common in blokes anyway. neither of my kids have it , but they are both still under30, and one is a boy.
As for the melasma; (quick google search of malasma +thyroid returns lots of studies)
eg;
pubmed.ncbi.nlm.nih.gov/392..." We conclude that there is a true association between thyroid autoimmunity and melasma, mostly in women whose melasma develops during pregnancy or after ingestion of oral contraceptive drugs".
Background: Thyroid hormones may play a key role in melasma; however, melasma link with thyroid disorders remains controversial.
Conclusion: Serum levels of TSH, anti-TPO, and antithyroglobulin antibody were significantly higher in patients with melasma than those without melasma. Moreover, these differences were more severe among women with melasma."
These studies are looking at Thyroid Peroxidase antibodies (TPOab) ~sometimes called (anti)microsomal thyroid antibodies. There are the ones which are usually used to indicate autoimmune thyroid damage , and raised TPOab show an increase likelyhood of developing full overt hypothyroidism at some point . (TSH over range and fT4 under range)
Part of understanding your risk of developing hypothyroidism is to get your TPOab 's tested , an over-range(positive) result in someone who's TSH/fT4 is still within the reference range means it's more likely to develop hypothyroidism at some point..., but an normal result doesn't rule it out, as not everyone with autoimmune hypothyroid damage has positive TPOab.
So basically , GP is right to keep an eye out in your case , but at the moment he wouldn't consider doing anything about replacing your thyroid hormones.
But if you test at same time of day and TSH is 3 then 4 , (especially if they see positive TPOab) it would indicate that you are developing a problem, and once TSH is over the reference range (and stay's there for 2x tests taken 3months apart) ,they could consider giving you Levothyroxine.
This is really ever so useful, thank you. My tests are always done at 8.30am before breakfast so it's good to know that the Surgery have always advised me well on that one. Lots to learn and I'm really appreciating the thoughtful and sensible discussions here.
Sound's like you have a well informed GP/surgery .. which makes a nice change !
Lots of people get fobbed off with 'your thyroid test is normal' if their GP saw a TSH of 2/3/4 .... even if they had a very strong family history.. and many GP's would not think about the ?thyroid connection to melasma.
The fact they have decided to monitor you at all, is good . ...the fact they have now increased it to 6 months and already told you about early morning testing is a very good indicator of their competence ... we see an awful lot of 'GP lack of awareness' about thyroid issues on here.
If we assume that you will get hypothyroidism at some time in the future, there are certain problems commonly associated with being hypothyroid that you can plan for and reduce the risk of, and reduce those effects starting now.
I'm talking about having low levels of nutrients, which is a common feature of being hypo.
The fact that you have dry skin, slow digestion, and heavy periods is very suggestive of hypothyroidism to come.
When people start taking Levothyroxine many do well on it from the very beginning, and their hypothyroidism is not a drastic problem in their life. You can increase your chances of doing well on Levo by optimising several of the nutrients that the human body needs in handling thyroid hormones properly.
Please be aware that the people who come to this forum are the ones who don't do well with thyroid treatment - they are undiagnosed, or diagnosed late, they are not treated or are under-treated or wrongly treated. But there are hundreds of thousands, possibly even millions, of people with thyroid disease who never come here who do very well on thyroid treatment from day one. So don't assume that your life will be awful if you are hypothyroid. And you can increase your chances of being one of the people who does well on the standard treatment by optimising your nutrient levels.
Describing thyroid disease in just a few sentences... The thyroid produces T4 which is a storage hormone and lasts a long time in the body. The thyroid also produces T3 which is the active hormone needed by every single cell in the human body, and it lasts for a fairly short time in the body. But the T3 produced by the thyroid is only about 25% of what the body needs. To make the rest of the T3 required the body uses T4 as the raw ingredient in other organs of the body and converts it to T3 as necessary.
That is where the nutrients come in. Several vitamins and minerals are required to help the body convert T4 to T3.
The ones that have been identified as being most important are :
1) Vitamin B12
2) Folate (anotherB vitamin)
3) Vitamin D
4) Ferritin (iron stores)
If ferritin turns out to be low you might need to get a full iron panel before supplementing to improve iron levels. Note that iron is poisonous in overdose and should not be taken unless necessary.
All of these can be tested by a doctor, but many doctors won't do it because of the cost, and so we are forced to do private testing with finger-prick testing. (No doctor required). Ask about this if you want to know more.
One problem we have with nutrients is that doctors aren't taught about them at university. Their lecturers at university might discuss iron deficiency anaemia, or anaemia caused by other deficiencies or problems, but they (doctors) are taught that any test result which is within the reference range is absolutely fine. So, somebody could have a ferritin level of 20, and someone else could have a level that is ten times as much, and they are considered to be both well and have no need for treatment. This is not true. We need optimal to have a chance of feeling well. And please note that optimal varies from nutrient to nutrient. It isn't always mid-range or high in range or low in range.
If you were to get the nutrients I listed above tested and got a copy of the results and posted them here along with their reference ranges we could give you feedback on whether they are too low or optimal or too high. If they are too low we can tell you what to supplement with and at what dose.
Your heavy periods might be improved by optimising your iron/ferritin levels. Your dry skin skin might be improved by optimising your B12 and/or folate. There are never any guarantees though.
As for your slow digestion, this is also a common hypothyroid problem. It is always suggested on this forum that people with thyroid disease should go 100% gluten-free. People don't have to suffer from coeliac disease to benefit from going gluten-free, and blood tests often won't show a problem. Many of us have no obvious problems associated with gluten and yet benefit hugely from going gluten-free. Try the experiment for 3 - 4 months. If you get no benefit then you can start eating gluten again.
If you do the things that I've mentioned above, it might slow down the development of hypothyroidism, and if/when you are declared to be hypothyroid you should have a greater chance of doing well with the standard treatment (which is a blessing if it happens), and finally, it should make you feel a lot better generally as soon as you start treating yourself.
This is really so helpful - thank you for taking the time to reply. My Sister has been on iron tablets for an absolute age but I hadn't a clue it might be associated, I am going to look into the tests this evening. I had been considering going gluten free for a while now, it is certainly easier to buy gluten free products in the shops these days even where I live in back-of-beyond Devon so I am definitely going to give it a try.
The reason nutrients are a problem in hypothyroidism is that the condition reduces the stomach's ability to produce stomach acid.
Good levels of stomach acid are necessary to help digest food properly and to extract nutrients from food.
It is possible to take over-the-counter supplements which can artificially increase the acidity of the stomach, but it is a big subject and should probably wait for another day.
Unfortunately for us, low levels of stomach acid actually give people heartburn and indigestion and other common stomach and digestion problems which are assumed to be caused by high levels of stomach acid. And what do doctors do? They prescribe PPIs like Omeprazole and Lansoprazole which shuts off stomach acid even more.
My Sister has been on iron tablets for an absolute age
Along with a lot of people on the forum I have problems holding on to iron. I've been iron deficient most of my life, and have been frankly anaemic quite often too. (You can be iron deficient without being anaemic, but iron deficiency should be treated with or without anaemia.)
If someone manages to optimise their iron and ferritin they really need to find a maintenance dose which will maintain it at an optimal level. Otherwise the iron/ferritin just drops rapidly and the whole problem starts all over again.
If your sister wants to join the forum to discuss her hypothyroidism and related problems she would be welcome.
If you decide to go with private testing, before you spend any money you might want to write a new post, let us know what you plan to buy and ask if they are a good choice.
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