I've been following a few forums for a while but have never posted.
I'm at my wits end and don't really know where to turn next.
I've been going to my doctors with the same symptoms for about eleven years and have spent most of that time being fobbed off with a diagnosis of depression, iron deficiency, stress etc etc
My symptoms are fatigue, dizziness, brain fog, poor memory, always cold, eye sight disturbances, always tired, hair loss, but no weight gain.
I finally relented (even though I knew the diagnosis was wrong) and went on antidepressants. I was on them on and off for about two years but they made no difference.
Finally, after continuously go back to the doc, I was sent for a full spectrum blood test in June that showed I had thyroid antibodies ( though everything else was just about within the normal range). I was put on 50mg Levothyroxine-took these for a month and saw no improvement in symptoms. Got a repeat prescription and, through sheer desperation, increased my dose to 100mg without telling the doctor. It still made no difference.
I've just got results back from another blood test and my doc said I'm now hyperthyroid and is reducing my dose to 25mg. He did not check for antibodies this time.
What do I do next?
I've been sick for so long that I just can't keep going on. Sometimes I don't feel like it's worth it. I can't seem to get my doc to understand how serious it is.
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Ruthmt81
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Your story is very familiar unfortunately. Doctors seem so poorly educated about thyroid conditions.
The first thing you need to do is be patient (unfortunately). You have been unwell for a long time, and it takes a long time to get better. It's not a quick fix, we're not taking an aspirin here, we're taking hormones, and hormones have to be built up gradually. It can take months to feel better, and you may find that you have perfect test results before you feel properly well.
The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo.
Hopefully you're no longer on antidepressants, if you are then take them as far away from your Levo as possible.
If you would like to post the results of your private blood tests, members can comment. Include the reference ranges as well as the results.
As you had high antibodies confirming Hashi's, your GP did the right thing in prescribing Levo. I wonder if your TSH was over range as well, normally most doctors know very little about Hashi's and dismiss antibodies, but some are enlightened enough to start Levo when antibodies are present.
When starting Levo, it takes about a week to be absorbed and 6-8 weeks for the full effects to be felt. So you jumped the gun a bit there by increasing the dose yourself. Increases should be gradual, 25mcg increments, not 50mcg so that didn't help. You're not hyperthyroid now, you can't be. If you're hypo there's no way you can suddenly become hyper. But you can be overmedicated and this is possibly what happened. Can you get the results of this latest test so we can see why your GP reduced your Levo to 25mcg. The Data Protection Act gives us the legal right to have a copy of our results, so just pop along to your surgery and ask for a print out. Post them on the forum for comment. He should never have reduced from 100 to 25mcg anyway, the very most he should have done is reduce back to 50mcg.
Antibodies don't need rechecking. Once they're positive that's it, you have Hashi's. No point in retesting, all it will tell you is if there are more, or less, at the time of testing. Antibodies fluctuate, that is the nature of Hashi's.
Here's some information about Hashi's, read and learn because you'll very likely be on your own with this, most doctors know nothing about it.
You have autoimmune thyroiditis aka Hashimoto's disease. Hashimoto's isn't treated, it's the resulting hypothyroidism that's treated. The antibody attacks will eventually destroy your thyroid. Each antibody attack will destroy a bit more of your thyroid until eventually it will be completely destroyed, but that can take years. The antibody attacks cause fluctuations in symptoms and test results and you may find that you can swing from feeling hypo to feeling hyper, the swings are temporary.
You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.
Hashi's and gut/absorption problems can go hand in hand and very often low nutrient levels are the result. We hypos need optimal levels of vitamins and minerals for thyroid hormone to work, so it's important to have the following tested. If they were included in your private test, please post the results, with ranges, if not then ask your GP to do them:
Vit D
B12
Folate
Ferritin
If you have any low levels or deficiencies we can suggest supplements/dose.
**
Always take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, for an hour either side. Take Levo away from other medication and supplements by 2 hours, some need 4 hours.
**
When having thyroid tests, always book the very first appointment of the morning, fast overnight (water allowed) and leave off Levo for 24 hours. This gives the highest possible TSH which is needed when looking for an increase in dose or to avoid a reduction. TSH is highest early morning and lowers throughout the day. It also lowers after eating. This is a patient to patient tip which we don't discuss with doctors or phlebotomists. Keep a record of your results, including the ranges, dose of Levo, how you feel, etc. It will be useful in the future.
Well, that wasn't the best move you could have made. Although I do understand your desperation, but you really weren't likely to feel much improvement on 50 mcg for one month. It would have been better to sit out the six weeks and get retested, then you would probably have got an increase in dose. All hormones have to be started low and increased slowly. With levo, that means starting on 50 mcg, and increasing by 25 mcg every six weeks. Surely, if you've been reading on here, you must have seen that.
So, now, an idiot doctor, who knows nothing about thyroid, has pronounced you 'hyper' - even though he should know that's physically impossible - and reduced your dose by way too much to a rediculously low amount. This is one of the reasons we always say that trying to take short cuts never works.
So, now, presumably, you will get retested in six weeks, and your TSH will have gone up again, and he will have to increase your dose again, and you'll be back to square one. However, all is not lost. You may feel pretty terrible at the moment, but hopefully you can now do it the right way, and improve.
When you go for your next test, make sure the blood test is early in the morning - before 9 am - and fast over-night. Take your levo after the blood draw. If you can, ask for them to test vit D, vit B12, folate and ferritin at the same time, because these are going to be sub-optimal, and won't help things. Make sure you get a print out of your results - if you live in the UK, it's your legal right to have one - and then post them on here, with the ranges, and people will be better able to help you.
As for the antibodies, no need to test every time. If they're high once, then you have Hashi's - aka Autoimmune Thyroiditis. Doctors ignore this, because there is no cure, and the treatment is the same as any other type of hypo. But, what you can do is adopt a 100% gluten-free diet, and take selenium. Should help.
I was on anti d's for 16 years and was illl all that time. I self treated and proved to an endo I needed thyroid hormones.
It can be a slow process to get health back. So think in terms of months and years rather than weeks. The aim is steady progress upwards.
It is unlikely to be a case of take thyroid hormones and get better immediately. You need to look at diet, the vits and minerals and adrenal health.
T4 only may not help fully, you may want to look at using some t3, but at the moment getting this on the NHS is almost impossible. But you can buy it cheaply from Europe. Ask on here for an address and someone will pm you.
T3 wants to be used in small doses to start with though. I only use 3mg per day but it makes a big difference.
Also look at taking the t4 at bedtime as this can make a big difference and is very simple to try out.
My blood results are good for ferritin and B12 but vit D is very low. I've been taking a supplement for about 7 months and will be getting it checked next week.
I've been gluten and sugar free for about 6 months and my leaky gut now seems fixed 😊 All IBS symptoms have gone though I know full gut repair can take some time.
I take a thyroid supplement containing Iodine and selenium, eat hardly any processed food and, not being a meat-eater, I eat more than my fair share of fruit, veg, nuts, seeds etc.
Is there anything you think I might be missing or a combined supplement anyone can recommend?
I'll look into T3- I didn't know anything about it.
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