Hi I am new and to be honest I feel very depressed and overwhelmed with my hypothyroidism because I have had pretty much every single GP and endo not take my health seriously. I was diagnosed in 2011 but I was not started on Levothyroxine until 2012. I have been sent away with antidepressants, antipsychotics, painkillers and my symptoms are now so bad they are depressing me when I should be happy getting married next year. I had Levothyroxine started at 25mcg then 50mcg and increased up to 125mcg but then it was stopped and my thyroid levels went crazy. GP accused me of overdosing which I did not do and said she would not treat me until I stopped killing myself by overdosing on Levothyroxine. Regardless of what she thought or said I went back on to a low dose which was 50mcg with my new GP's help and this continued until I had to move to a new area in 2015 and my dose was gradually increased again to 175mcg with regular testing. Was under a really good GP until I moved back to my old area again (long story) and went back to another local GP who to start with I got on well with but as soon as I had overdosed results again I was accused of taking more Levothyroxine than I should have (I did not do this) and when I went to a new appointment with a different GP she asked me if I was suffering from stress due to symptoms of constipation, hair loss, tiredness, muscle cramps, weight gain. When I saw my endo he also accused me of the same thing. I have now moved GP practices again because my current one has been playing about with my dose of Levothyroxine, moving it from 175mcg to 100mcg and did not see me for my 12 o clock appointment to tell them that I was unhappy with the level of care received by my endo. As title suggests I feel hopeless and that I am worried I will never feel or get better and I am anticipating some comments asking me to seek a therapist or ask about antidepressants in case my symptoms are in my head. Advice appreciated. Thank you
Serum TSH 6.32 mIU/L (0.2 - 4.2)
Serum Free T4 13.9 pmol/L (12 - 22)
Serum Free T3 3.1 pmol/L (3.1 - 6.8)
Thyroid Peroxidase antibody 875 IU/mL (<34)
Thyroglobulin antibody 368.3 IU/mL (<115)
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Dannilo
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Welcome to our forum and don't worry as the majority of members have had doctors like yours who seem to be poorly trained. Maybe your good doctor had hypo herself and that's why she was better as she'd understand more.
Doctors prescribe anti-depressants due to clinical symptoms. They will not prescribe levothyroxine due to the patients' clinical symptoms but will prescribe something for the symptom, i.e. pain relief, anti'd's, statins, etc etc when in fact the poor patient needs a decent dose of levothyroxine - also known as T4.
Most on this forum have had a disastrous time, either getting diagnosed and being given levothyroxine but feeling worse or being diagnosed but doctor keeps adjusting dose up/down/up/down every time the patients goes to the surgery for help. They feel like a nuisance because of their severe clinical symptoms which aren't relieved by the prescription the doctor gives them for the symptom and not the hormones they desperately need.
It is a pity you had to go back and leave your good doctor behind but that's life and am sure you will get help support from our members.
I think you will tick off more than a couple of symptoms above.
All tests for thyroid hormones have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between lasst dose and test and take afterwards. This helps TSH to remain higher as it drops throughout the day and means an adjustment you don't want.
Try not to worry as most members have recovered their health through their own efforts and the support of members - most of whom had experiences they don't want other to have.
The aim of replacement hormones is to have a TSH of 1 or below. Doctors have got the wrong end of the stick and think if it is 1 or lower we're on too much. Only if we have troublesome sensations of being overactive should we reduce slightly i.e. very fast pulse or heart beat, sweating etc. Many are happy if TSH is around 5 - that's far too high once diagnosed.
You need TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. B12, Vit D, iron, ferritin and folate. The lab may not do all of the thyroid hormone tests but you can get those not tested by one of our Private Labs and I'll give you a link just in case. This procedure shouldn't be necesary but it will help us recover. We need a TSH of 1 or lower with Free T4 and Free T3 in the upper part of the range. T4 (levothyroxine) is a prohormone - inactive - and it has to convert to T3 (the only active thyroid hormone needed in all our millions of T3 receptor cells.
Also deficiencies in B12, Vit D, iron, ferritin and folate can also give us symptoms.
You are on too low a dose of levothyroxine. You have an Autoimmune Thyroid Disease called Hashimoto's which is the commonest form of hypothyroidism. The high antibodies above show that you have hashimoto's and going gluten-free will help reduce the attack of them on your thyroid gland. They attack your gland, sometimes too much and at other times lower until you are hypothyroid.
Both FT4 and FT3 are at the bottom of the range whereas they should be towards the top part of the range. Request an increase of 25mcg and in six weeks get another test and so on until your TSH is 1 or lower. With FT4 and FT3 nearer the upper part of the range.
As I thought, you have Hashi's. That was just so obvious from reading your story, that I didn't need to see the results!
When your doctors were accusing you of over-dosing on levo, what was really happening was that you were having a Hashi's 'hyper' swing. The immune system attacks the thyroid and kills off a few cells. As the cells die, they release their store of thyroid hormone into the blood, so that FT4/3 levels soar, and therefore the TSH drops. But, doctors are so criminally ignorant that they don't know this, and rather than trying to understand what is happening, they prefer to blame the patient! Anyway, if it happens again, you will be able to enlighten them!
So, the result is that you are now very under-medicated. And I imagine that your silly doctors can't understand why. Tell them you want an increase in dose, straight away, if you please! And that, if it's all the same to them, you'd prefer to keep your TSH suppressed, in future - which is not a problem if the FT3 is in-range - in order to avoid future Hashi's swings.
Thanks greygoose. Yes the GP called me when previous results have come back with TSH below range and she said I was overdosed but when my undermedicated results came back the GP tried to get hold of me about 4 times last week leaving voicemail messages saying there must be a discrepancy with my dosage!
"I had Levothyroxine started at 25mcg then 50mcg and increased up to 125mcg but then it was stopped and my thyroid levels went crazy. GP accused me of overdosing which I did not do and said she would not treat me until I stopped killing myself by overdosing on Levothyroxine. "
"as soon as I had overdosed results again I was accused of taking more Levothyroxine than I should have (I did not do this)"
"When I saw my endo he also accused me of the same thing. "
Your treatment has been diabolical. But sadly, based on posts to the forum, this bullying, and accusations of lying, and the general vile treatment of thyroid patients (who are mainly women of course) is becoming more common, and it is unjustified and very, very unfair.
1) If you have a parent, relative, partner or friend who is sympathetic to you and will back you up to the hilt, take them with you to doctor and endo appointments in future. Do not go alone. When there are witnesses doctors tend to be more polite. You could also take along a gadget to record the consultation, either openly or secretly. You don't have to ask for permission (unless you want to), and it is your legal right to do this.
2) When you are accused of overdosing on your thyroid medication in future, point out that you take the amount that you've been prescribed, and since repeat prescriptions are controlled by doctors you can't take more than is prescribed without running out before the next prescription is due!
3) The real reason why your numbers fluctuate so much, and why your doctors keep making these awful allegations, is probably because your TSH is dropping low in range or below the reference range.
When it happens this is not your fault. The cause is your antibodies, and both these tests are positive :
Thyroid Peroxidase antibody 875 IU/mL (<34)
Thyroglobulin antibody 368.3 IU/mL (<115)
The above results show that you have autoimmune thyroid disease (the name used by UK doctors), which is also known as Hashimoto's Thyroiditis (the name used in the US) or Hashi's (the name used by patients). There is no pill anyone can take or prescribe that will reduce the numbers of antibodies, so doctors generally ignore these numbers. They may speed up a diagnosis of hypothyroidism when they are found in testing, but after that the doctors ignore the numbers and almost never test antibodies again.
But it is those antibodies which are attacking your thyroid and causing your thyroid function test results to fluctuate. The numbers of antibodies fluctuate hugely as do the activity levels of the antibodies.
When the antibodies attack the thyroid and destroy the cells in the thyroid, the damaged or destroyed cells will release the thyroid hormones stored in them. These hormones end up in the blood stream and are detected in blood tests. The Free T4 and/or Free T3 go high and the TSH responds to these high levels of thyroid hormones by dropping low or very low. Doctors then think that the patient has been abusing their thyroid medication by taking more than they were prescribed.
Eventually your thyroid will be so badly damaged that even when it gets attacked it will not raise levels of hormones very much, and you will be permanently hypothyroid.
4) The constant fluctuations in levels of hormones is exhausting for patients. And with doctors not trusting patients they end up chasing the patients numbers trying to raise and lower their thyroid medication to get the TSH level where they think it should be. They (the doctors) blame the patient for the numbers not being what they like. And when doctors raise and lower Levo dose, they always drop the amount hugely, and raise the dose slowly, meaning that patients are often very under-medicated.
5) Your best chance of improving your health and getting some stability into your dose of levo is to lower the antibody numbers. Unfortunately there are no guaranteed ways of doing this. The main way of doing this is dietary. Many patients find that going 100% gluten-free reduces antibodies. If it doesn't work then they can go back to eating gluten again. Some people give up animal milk products so that they eliminate lactose and casein. Some people try other things. It is trial and error. I wouldn't suggest trying multiple things as once, I would only try one thing at a time. And if someone gets no benefits from a particular experiment (give them about 3 months), abandon that experiment and try something else. There are lots of posts on gut health and the diet on this forum.
6) Your other option is to abandon the doctors as far as testing and treating your thyroid is concerned and treat yourself. It can be nerve-racking and scary, but many people do it because thyroid treatment around the world is so appalling.
7) You will also feel better if you can optimise your nutrient levels. Read SeasideSusie's replies on the subject of optimising nutrient levels :
Thanks, unfortunately my partner is not supportive of my condition and the last time my parents came into an appointment with me my dad suggested I had mental health issues and got the GP to prescribe me an antidepressant. The only friends I have are ones at work who said they would come to appointments with me.
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