I am a 28 year old woman with most of the symptoms of hypothyroidism:
- extreme lethargy (I need to sleep at least 10 hours a night and nap during the day)
- zero libido
- periods all over the place (sometimes 28 days apart, sometimes 40)
- hair falling out
- have put on weight but have less of an appetite
- muscle weakness and joint pain
- slow heart rate (around 55bpm, and I’m certainly no athlete!)
- feel slight constriction at front of throat when swallowing
-I have coeliac disease which is often linked to thyroid disease
- my Mum has thyroid disease and suffered 6 years of recurrent miscarriage before finally being diagnosed and treated. She is on levothyroxine
My GP got me to do some blood tests, and it came back with the following abnormalities:
- TSH too high at 4.74 mlU/L (should be below 4.68 generally, and under 2.5 for my age group)
- Free T4 on the lower end at 13.3 pmol/L (range is 10 to 28.2)
- C reactive protein too high at 6.3 mg/l (should be 0 to 6)
- Cholesterol too high at 6.1 mmol/l (should be under 5)
- Ferritin on the lower end at 18 ng/ml (range is 6 to 137)
I then did a Thriva blood test which showed the following abnormalities:
- Thyroid peroxidase antibodies far too high at 125 klU/L (should be under 34)
- Thyroglobulin antibodies too high at 176 kU/L (should be under 115)
- Vitamin D too low at 35.3 nmol/L (should be 75 to 120)
The ferritin and vitamin D results are strange, because I take an A-Z multivitamin&mineral pill which contains 100% the recommended daily amount of these nutrients. I have read that poor synthesis of ferritin and vitamin D can be linked to thyroid issues.
I went back to see my GP, and she said that because I am “sub clinical”, she does not feel comfortable prescribing anything to me. She said the antibody blood tests were unimportant because she expects them to fluctuate. She wanted me to keep getting checked every year until my TSH was over 10, and then she would prescribe levothyroxine.
I explained that I want to get pregnant soon, and that I had read TSH should be below 2.5 for a healthy pregnancy. She agreed to refer me to an endocrinologist to discuss things further.
I am very worried that the endocrinologist is also going to want to wait until my TSH is above 10 before anything is done. My life is basically unliveable with these symptoms and I’m very concerned I won’t have a healthy pregnancy. I don’t want to go through 6 years of miscarriages like my mum.
My questions:
1) With thyroid antibodies that high, do I have hashimotos?
2) Am I being reasonable to want help at my current TSH levels? I feel absolutely awful already at 4.74, I can’t even imagine how bad I’ll feel as I wait for it to climb to 10.
3) How important is it to get TSH below 2.5 for pregnancy? Will I hurt the baby if it’s too high?
4) Is there anything I can do naturally to reduce my antibodies and improve thyroid function in the meanwhile? I already take supplements and eat a strictly gluten free diet.
5) If the endocrinologist won’t help me, what should I do?
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TiredReader
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Your hypothyroidism is not sub clinical….because you already have symptoms
High thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high 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.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
Low vitamin levels are a direct result of being hypothyroid due to LOW stomach acid leading to poor nutrient absorption and therefore low vitamin levels as direct result
Low vitamin levels tend to lower TSH
ESSENTIAL to improve low vitamin levels by taking good quality separate vitamin supplements
Multivitamins never recommended…..too little….poor quality ingredients…only for the worried well….useless for actual vitamin deficiencies
Also multivitamins contain iodine not recommended for anyone with autoimmune thyroid disease
See (different?) GP to get vitamin deficiencies addressed
Book retest of thyroid in another 4-6 weeks
Book early morning test, ideally just before 9am and only drink water between waking and test …..this will give highest TSH
vitamin D
Vitamin D too low at 35.3 nmol/L (should be 75 to 120)
Vitamin D is insufficient
GP should prescribe 1600iu daily for minimum 6 months
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
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
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.
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. ‘
Coeliac is very very strongly linked to Hashimoto’s
How long since you were diagnosed as coeliac
Are you absolutely strictly gluten free
You may also need to be dairy free
Do you suspect dairy intolerance?
She wanted me to keep getting checked every year until my TSH was over 10, and then she would prescribe levothyroxine.
This is completely INCORRECT
Starting levothyroxine - flow chart
Two separate blood test results with TSH over range or at least over 5, and symptoms and high thyroid antibodies…..you qualify for starting on levothyroxine
Standard starter dose levothyroxine is 50mcg and dose is increased slowly upwards in 25mcg steps over 6-12 months until on full replacement dose
Levothyroxine doesn’t “top up” failing thyroid, it replaces it. Very important to get dose increased once blood tests show ready for next increase in dose
Very important…….Low vitamin levels need improving at same time so that it’s possible to tolerate increases in dose levothyroxine
guidelines on dose levothyroxine by weight
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 near full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
1) With thyroid antibodies that high, do I have hashimotos?
Yes, you do.
Your doctor is right that antibodies fluctuate, but someone without Hashi's never has a level over-range. You do. So, you have Hashi's/Ord's.
2) Am I being reasonable to want help at my current TSH levels? I feel absolutely awful already at 4.74, I can’t even imagine how bad I’ll feel as I wait for it to climb to 10.
Yes, you are. You are technically hypo when your TSH reaches 3, and it some countries you would be treated at that level - especially as you have Hashi's.
3) How important is it to get TSH below 2.5 for pregnancy? Will I hurt the baby if it’s too high?
First of all, you have to understand what the TSH is:
Thyroid Stimulating Hormone. It's a pituitary hormone. It's job is to stimulate the thyroid to make more thyroid hormone when the pituitary senses there's not enough in the blood. It also stimulates conversion of T4 to T3. And that's all it does.
Doctors do not understand that, and think that the TSH 'tells them all they need to know'. It doesn't It is a vague indicator of thyroid status but not always a very good one. The important numbers are the thyroid hormone: FT4 and FT3.
The thinking is that if your TSH is over 2.5 that the thyroid hormones will be too low for you to conceive and carry a baby to term, because your thyroid hormones must be shared with the baby in the first trimestre, before s/he develops a thyroid of its own. But, thyroid hormone levels can be way too low before the TSH gets to 2.5, which is why they should always be tested with the TSH. Doctors don't know that.
But, the TSH itself won't do anything to your baby, and will not cause you symptoms whether it's high or low. It's just a rough guide. And, actually, it should be around 1 for all age groups.
4) Is there anything I can do naturally to reduce my antibodies and improve thyroid function in the meanwhile? I already take supplements and eat a strictly gluten free diet.
There's nothing much you can do to improve thyroid function because it is being slowly destroyed by your immune system (NOT the antibodies). All nutrients should be optimal, of course, but that won't stop the destruction.
And, on the subject of nutrients, multi-vits containing 100% of recommended daily amounts will not solve a deficiency. It's like trying to fill a bucket with a hole in it. But, that's just one of the reasons multi-vits are not recommended, there are many others. For example, if it contians iron, it will block absorption of the vitamins, which is why it wasn't doing anything for your vit D levels. And, if there is calcium in it, the calcium will bind with the iron and you won't absorb either of them.
As for the antibodies, as I said, they are not the ones attacking your thyroid. They have a job to do cleaning up the blood after an immune system attack on your thyroid. So, why would you want to lower them? I have never seen any proof positive that they do any harm.
5) If the endocrinologist won’t help me, what should I do?
That's the big question! Another question is: will you have any say in which endo you see, or will you have to see the one your GP decides on? Because not all endos are created equal. Most of them are diabetes specialists - it's very difficult to find one that specialises in thyroid. And, some of the diabetes specialists know more about thyroid than others. If you can, check up on the credentials of the one you're going to see, before you see him - or her. Forwarned is forarmed.
- Cholesterol too high at 6.1 mmol/l (should be under 5)
High cholesterol levels in hypos are usually caused by low FT3. You don't seem to have an FT3 test result. But, don't let them bully you into taking statins! They are not recommended for hypos or for women. And, besides, high levels of cholesterol are not the problem they make them out to be. It's a symptom, not a disease. And cholesterol won't kill you, statins could.
- Ferritin on the lower end at 18 ng/ml (range is 6 to 137)
That's very low. Is your doctor going to do a full iron panel?
The reason hypos usually have low nutrient levels/deficiencies is that low T3 causes low stomach acid, and therefore difficulty digesting food and absorbing nutrients. You could try taking some sort of source of vit C with your meals to help with absorption.
I am very worried that the endocrinologist is also going to want to wait until my TSH is above 10 before anything is done.
He shouldn't because you have high antibodies. But, he will probably want an over-range TSH on two consecutive tests, to make sure the first one wasn't a fluke! Rediculous when you have high antibodies because you're going to end up without a thyroid, anyway, but they do like to follow the protocols they learnt in med school, whether they make any sense or not!
a fetus doesn't grow a thyroid of it's own until about 11/12 wks .. until that point it is totally dependant on adequate levels of maternal thyroid hormone for proper development and for maintaining the pregnancy .. so you really do not want to be getting pregnant while you have untreated hypothyroidism / or subclinical hypothyroidism ...... and even if you get away with it without any harm , you really won't enjoy looking after it if you have untreated hypothyroidism.
Your best bet for getting treatment quickly is to tell the endo that you want to get pregnant and are trying to conceive ( they are more likely to treat you if they think you'll be getting pregnant) ... but .. DON'T get pregnant until you are treated and on a stable dose of levo .
This may be useful, it's woth a read , note ~ it's just a draft as yet ~ but it will probably become the basis for new NHS pregnancy / thyroid guidelines :
Wow, thank you so much @SlowDragon @greygoose and @tattybogle for your incredibly helpful responses!!! So very very much appreciated.
My GP did not test my T3, just TSH and T4. I did the blood test fasted at 8:30am.
Regarding the low ferritin, I am not vegan/veggie and regularly eat red meat, and my periods are not overly heavy, so I’m not sure why my levels are so low. Unfortunately my GP thinks my ferritin is fine, so I’m going to have to sort this out myself.
I will stop taking the multivitamin, I didn’t know it was ineffective, or that iodine was bad for me.
My folate and B12 were both fine, in fact B12 was towards the top of the range. I only posted the abnormal or lower end results.
I was diagnosed coeliac 3 years ago, but in hindsight I believe I was suffering for many years before getting diagnosed. I eat a very, very strictly gluten free diet - I get terribly ill from gluten.
I don’t seem to have a dairy intolerance, but am willing to give it up for a while to see if anything improves - I’ll try anything to feel better!
So, how does this sound as a plan of action:
1. Stop taking the multivitamin, take separate vitamin D and iron supplements instead, and monitor via quarterly blood tests to see if levels improve.
2. See endocrinologist - I have been referred to one who lists adult diabetes and thyroid disorders as his specific clinical interests, so I hope he will be knowledgeable. Hopefully get prescribed a starting dose of levothyroxine, follow up with blood tests to bring TSH down and eradicate hypo symptoms.
3. If that fails, book an appointment with one of the recommended endocrinologists listed in @SlowDragon ‘s post and hopeful get this sorted with them.
4. Make sure vitamin levels and thyroid levels are sorted before conceiving.
A good plan but I would mention that before adding iron you need them to run a full iron panel as you can be low in ferritin but still high in iron 😵 and the last thing you need is too much iron 🤗
As the others all say push that you are looking to conceive or possibly are in the early days of pregnancy to get them to prioritize you hopefully 😏
I am very worried that the endocrinologist is also going to want to wait until my TSH is above 10 before anything is done. My life is basically unliveable with these symptoms and I’m very concerned I won’t have a healthy pregnancy. I don’t want to go through 6 years of miscarriages like my mum.
That is very understandable - apart from the physical toll, the emotional toll would likely also be huge. Your poor mum.
I see you've been given incredibly comprehensive info about all your questions and you have a good plan of action plus you demonstrate great fighting spirit
My own inclination is to say that for now, totally concentrate on getting yourself well and then get pregnant. It may take some time but you are not at all geriatric (unlike moi) and somehow very often "waiting" is a gift.
Well done for finding the energy to get onto this forum, for being proactive and for questioning the 'professionals'. I suspect many of us here, including myself went through 'an unliveable life' for several years or more whilst doubting our sanity before we somehow found the energy to push for treatment. I am still angry about it. This forum is amazing for support, good advice and proper evidence. Good luck, and let us know how you get on.
Just to add to what SlowDragon said about iron rich foods, I add a tablespoon of pumpkin seeds to my muesli type breakfast cereal every morning. I used to have a very high ferritin count (over a decade ago) quite possibly as a result of this, sufficiently good for my GP to express surprise and to ask what I was doing (we didn’t eat a lot of red meat). Even now I fall in the normal range for ferritin (not even borderline), though admitted it could be higher.
Like you I’m at the beginning of my thyroid journey as far as dealing with doctors is concerned. I’ve been under consultant led care for gastro for eight years or so (and had ended up seeing gastro cons a number of times before that). It’s only now that I’m beginning to realise that certain things that have cropped up over the course of the past few years might be thyroid connected. As far as we’re aware there’s no family history, though of course that doesn’t necessarily mean it wasn’t present. I’m in my sixties, so past child bearing age, but having struggled with digestive issues, a bout of gout (not pleasant) and, more recently, unexpected breathing issues and joint and muscle pain (the latter of which was put down as fibromyalgia) I’m beginning to wonder whether my thyroid gland has been playing up for longer than anyone reckoned. We know I’ve been above 3.0 for TSH since 2021, and this year I was found to be over 5.0 (twice - two different doctors got it checked). Sadly only one of those tests had an upper normal range of 4.2 (which meant a problem was flagged at once); the other, more recent, test came back with a normal range of up to 5.5 and as my result was 5.42 it hasn’t been picked up as abnormal or requiring additional testing - sigh. As I am not symptom free, and thanks to advice on this site, I will be asking to see a GP to discuss the issue. I’m not unused to taking on the medics (long medical history), it’s just annoying that I have to do it again.
Hi! Take some T3, it’s half life it’s only 24 hours; therefore, it will be out of your body in 48 hours. Your heart rate will increase to above 60 bpm., your energy will come back. From my own condition, I took 4 to 12 µg a couple times a day.
Home8808 . i have to say that is bad advice to give to someone in this position. for lots of reasons.... but for a start , it would prevent Tiredreader getting any official diagnosis and treatment on the NHS (because the T3 dose would lower TSH significantly)
Tired thyroid i strongly suggest you do not follow this suggestion.
T3 has it's place and it helps a lot of people , but that is not the right way to go about it.
" She wanted me to keep getting checked every year until my TSH was over 10, and then she would prescribe levothyroxine"This makes me wish I was a cardiologist to these doctors. Let's wait until your blood pressure is 300 over 200 before I treat it.
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