I had a baby 9 months ago. After various visits to the doctor with aches, dizziness and then my periods going crazy, a blood test revealed that I had thyroid trouble. (First blood test was TSH 46, then 3 weeks later, with no treatment, it was 26!) How does this happen?
Nobody has really explained how or why My thyroid has stopped working other than to say that my thyroid was OK in March 16 (baby was born in November 15). The only thing they did say was that I shouldn't get pregnant because I'd have a cretin. It was all very indelicate and upsetting.
They started me on 25mg of levothyroxine which I asked to be upped to 50mg after a week because I thought it was too low.
I feel a lot better on the pills but I would like my blood results explaining to me and my GP doesn't seem to be able to do that
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Clarabelleuk
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Thyroid peroxidase antibodies are positive for autoimmune thyroid disease (Hashimoto's) which causes 90% of hypothyroidism. There is no cure or treatment for autoimmune disease but 100% gluten-free diet may improve symptoms and reduce antibodies.
Puberty, pregnancy and menopause can all trigger Hashimoto's and hypothyroidism. Levothyroxine will replace the low thyroid hormone.
For maximum absorption Levothyroxine should be taken with water 1 hour before or 2 hours after food and drink, 2 hours away from other medication and supplements, and 4 hours away from calcium, iron, vitamin D supplements and oestrogen.
It takes 7-10 days for Levothyroxine to be absorbed before it starts working and it will take up to six weeks to feel the full impact of the dose.
You should have a follow up thyroid test 6-8 weeks after starting Levothyroxine. Arrange an early morning and fasting (water only) blood draw when TSH is highest, and take Levothyroxine after your blood draw.
Most people will find symptoms resolve after their TSH drops to around 1.0 with FT4 in the upper range but symptoms can lag a couple of months behind good biochemistry.
It may be hard to conceive when TSH is >2.0 and the risk of miscarriage increases when TSH is >2.0 but once your TSH is in the low normal range 0.4-2.0 there is no reason why you shouldn't concieve and have a healthy pregnancy and baby. Levothyroxine dose is usually increased by 25-50mcg when pregnancy is confirmed to ensure good foetal development. All newborns have a heel prick blood test to check for hypothyroidism before they are discharged from hospital.
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
Oh dear! What a terrible thing to say to someone!!! You really do wonder sometimes, if they are in any way human, or just robots!
With a TSH of 26, it's very doubtful you could get pregnant, anyway. It needs to be below 2. So, horrible as it is, I wouldn't worry too much about that.
So, what do your blood tests mean...
TSH - Thyroid Stimulating Hormone - a hormone put out by the pituitary, in the brain. When the pituitary senses that there is not enough thyroid hormone in the blood, it excretes more TSH to stimulate the thyroid gland to make more hormone. If, for some reason, the gland cannot respond, the TSH gets higher and higher and higher. It starts to go down, when the pituitary senses that there is more thyroid hormone in the blood. A so-called 'normal' TSH is around 1.
FT4 - Free T4 - a thyroid hormone. It is a storage hormone, secreted by the thyroid gland. It is a storage hormone, which has to be converted into T3, the active hormone. But, don't worry about that at the moment. Yours is obviously going to be low because the TSH is so high.
Thyroid peroxidase antibodies - these are antibodies produced by your immune system. If they are high, it means that you have the type of hypothyroidism called Autoimmune Thyroiditis - or, as we call it, Hashi's. This is where your own immune system is slowly destroying your thyroid gland. It's not sure why it does it, nor how to stop it - your doctor will know nothing about it, and that's why he hasn't explained it to you.
It's fairly complicated, but in a nutshell, the immune system destroys little bits of the gland, which then release the hormone they contain into the blood stream, giving you high levels of T4. Once all that extra T4 has been used up, you become hypo again, only more so, because there is less gland to make hormone. This process is repeated until there is no gland left and you become permanently hypo. This happens over a number of years, and is why levels can swing wildly. And, the fact that your gland was 'ok' in March 16, means nothing. You could just have been between what we call 'hyper swings'. You must have had this condition for quite some time for your TSH to get that high.
Although autoimmune diseases are incurable, there are things you can do yourself to help you feel better. You can adopt a gluten-free diet, which will lower antibodies. Taking selenium can also help. These are the first things to try. There's a lot more to learn, but one step at a time is the rule. Just take one step at a time.
So, your doctor put you on levo. This is not a treatment. Levo is what we call 'thyroid hormone replacement', it just replaces the hormone that your gland can no-longer make for itself. And, you were right. 25 mcg was not a high enough dose. The normal starting dose is 50. 25 can make you worse than you were before starting!
However, from now on, you can only increase by 25 mcg every six weeks. Any more will stress your body too much. So, six weeks after your increase to 50, go back for a new test. Go early in the morning, and fast over-night. And leave a 24 hours gap between your last dose of levo, and the test. You should always do the test in the same way, otherwise, you cannot compare results.
Did your doctor tell you how to take the levo? On an empty stomach, with a large glass of water to make sure it goes right down to your stomach, and leave one hour before eating or drinking anything other than water. If you are taking any other medication or supplements, leave at least 2 hours after the levo. That way, you will get maximum absorption.
As I said, it's a lot to learn. But don't hesitate to ask questions here - we have more experience in this than your doctor! lol
Clarabelleuk I can't add anything to the excellent information you've been given by Clutter and Greygoose but I just have to say
"The only thing they did say was that I shouldn't get pregnant because I'd have a cretin. It was all very indelicate and upsetting."
My jaw dropped when I read that. OMG, how ruddy insensitive and inaccurate. Who said this? Are they living on the dark ages? I would be making a complaint about that, it's disgusting.
It doesn't seem as though your GP knows much about thyroid disease if he can't even explain your blood results, so be prepared that you're not going to get much help from him. Stick around, ask questions here, learn all you can to help yourself because it doesn't look like you have much understanding of the disease by the people you've seen so far but at least you do have a diagnosis.
....... Walks away, shaking head in total and utter despair and thinking how much higher can the 'Cr@p Doctor Pile' grow .......
Thank you so much for your wonderful responses, they are so helpful. I honestly felt that my GP knew very little and so I didn't know where to go from there. You have answered lots of my questions and given me an good insight into what hypothyroidism is-thank you so much!
I was incredibly shocked by how my GP approached my questions about pregnancy and it just seemed even worse that she was a woman and a mother herself. Had it been a man I think I could have excused the indelicacy but mother to mother it just felt so much worse.
The only thing that completely befuzzles me about all this thyroid and conception business is I got pregnant last year in one shot (our first time ever in the fertile window and only once) Which doesn't ring true with having had hypothyroidism for a long time. I stopped taking the pill years ago because it didn't agree with me. I may ask for all my blood test results for the last two years and see if there is some kind of pattern. The only thing that flagged when I was pregnant was low ferritin and then afterwards, in March, low vitamin D. I read that another red flag for being hypo is failure to produce breast milk. I tried and I tried and I tried to breastfeed. I was in hospital for 8 days being pumped and prodded at and nobody could understand why there was no milk....and really, there was no milk. The breastfeeding specialist said it was incredibly rare for a mother not to produce milk to the degree that I did. In the end I bought a drug online called domperidone and that gave me some milk but still nowhere near enough. I took a lot of these pills and I thought maybe I had caused my thyroid to fail by taking them...but on a clear head I don't think that is what did it.
Fasting blood tests being higher also makes sense to me. The 46 TSH was first thing in the morning and I hadn't eaten or drunk anything because leaving the house for 9am with a small baby in tow, and having breakfast, is a skill that still alludes me! The next test was an afternoon and I'd obviously eaten. I will call the surgery and ensure my next test is in the morning-that's really good advice to always have them under the same conditions to compare results.
I take my tablet at night, should I stop doing this? Not eating for an hour in the morning would be incredibly out of character, I could give it a whirl though if it is going to make me feel better.
It does seem like there is much to learn but I'm sure I'll get there. I already feel so much better than I did, especially knowing that you guys are all so knowledgable and willing to help.
(((hugs))) Clarabelleuk It's even worse that a female doctor should say that to you, no excuses, just disgusting.
Don't stop taking your tablet at night, it doesn't matter when you take it, just take it to suit your routine. I take mine when I get up in the early hours for the loo, about 5am today. Keeps it away from my supplements and at the moment I am on antibiotics which would affect absorption of thyroid meds so I have to keep it as far away as possible.
Research has shown that taking Levothyroxine at night can be more effective in bringing down TSH than taking it in the morning. It's likely that there is better absorption that way.
It seems likely you were hypothyroid during your pregnancy because hypothyroidism can reduce breast milk production.
When going for your blood test, don't take your Levo the night before, delay it & take it immediately after you had the blood test.(waiting an hour to eat/drink)
It doesn't matter that you will also be taking next dose that same evening. Levo is a storage hormone, that converts as we need it.
If you read the posts on here you will learn a lot 😃
Having low ferritin and Vit D is extremely common in Hashis, as is low B12 and perhaps other things we don't know about. Do you know what your levels of these are now? Obviously it is best to get them optimal before the next babe.
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