I started 25mg of levothyroxine 7 weeks ago as my TSH was around 3.8 for a while. GP agreed to try this and then do fuller thyroid tests at 6 weeks. I went to see her today and she said my t4 was normal and TSH is now 2.3. I said I feel better but not right and she said she sought advice from an endocrinologist and he said my levels are ok so I can’t have anymore levo. He said I can have my tpo antibodies checked if I am still symptomatic so that’s the next test. I said if I have full work done provtaely would she discuss them with me and treat and she said yes. My plan is to now have the TPO but should can anyone tell me how long I should wait for the levo to leave my system? I forgot to ask as I was so upset at having to stop the meds. My mum had hypothyroidism but I am unsure if it was Hashimotos or not. I had a hysterectomy with ovaries removed 6 months ago so she would like me to increase my oestrogen HRT to see if it helps. Main symptoms are weight gain, low mood, joint pain, constipation, dry skin and losing hair. My thoughts are to leave it another couple of weeks and try the HRT and continue the healthy diet (I have a personal trainer fortnightly who said my diet is good and I only have very limited amounts of gluten and dairy now). Any advice very welcome, thanks.
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Fleur2016
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Hi Fleur2016. You do not stop meds to test antibodies. The only time that you sustain from taking medication is if you are testing FT3, FT4, and TSH. In this case you'd withhold from taking medication in the morning and test around 8 hours later. Is that Free T4, or Total T4? Total T4 is the wrong test. Your doctor did not test the other thyroid hormone, T3. That needs to be tested, too, because these two hormones work together.
There are two antibodies, by the way, not just one. TPOab and TGab. Both must be tested to determine if you have Hashimoto's or not. Doctors that only test TPOab and tell their patients that they don't have Hashimoto's mislead patients. TPOab can be negative but TGab can be positive and that would mean Hashimoto's.
You don't feel right because 25 mcg is not the correct starting dose for T4 (levo). Your prolonged symptoms are because you are under medicated. Your TSH (pituitary hormone, not thyroid) is still too high. It will be under 1.0 if you are properly medication. The starting dose is 50 mcg. Your doctor needs to read the prescribing details for T4. Bloods are tested every 6 weeks and meds are increased every 6 weeks until you have the least amount of symptoms. For some reason some doctors in the UK start people on too low of a dose or do not increase meds to the right level. This leads to being under medicated and prolonged symptoms. The goal for treatment is to suppress TSH under 1.0 and FT3 and FT4 high enough to either eliminate symptoms, or at least come close. For most people this means that FT3 and FT4 are over 50% and TSH is suppressed to the bottom of the range. When TSH is low, FT3 and FT4 are in good range, unless their is a pituitary or hypothalamus problem (central hypothyroidism). For me personally, if my TSH was 1.0, my FT3 and FT4 would be too low in range, and I'd have symptoms. I make sure to keep my levels optimal by taking the right dose of medication. I have barely detectable symptoms.
Taking HRT is not going to fix your thyroid problem.
Thank you for your quick reply. She has refused to continue at the 25mg as my TSH was only 3.8 originally which is really frustrating as I felt so much better and my recent test was 2.3. If she would not continue it I just wish she had not agreed to try it to start with. I read Hashimoto was treated with levo so didn’t know if I needed to stay off it for a while. I think that is what she is testing for but she didn’t say. I am trying my HRT increase to make sure some of symptoms are not caused by low oestrogen. I am willing to pay for private tests if needed but will see what the one she wants to do says. It’s just so frustrating that I felt a bit better then the treatment is withdrawn, why start it if it won’t be continued.
Hi Fleur2016. You're welcome. She took you off meds? Oh my! This is not the right doctor to treat Hashimoto's, or even hypothyroidism. You need a qualified doctor. Your TSH is still too high and it will go back to where it was and likely higher, as you thyroid hormones become lower.
Yes, Hashimoto's is treated with levo. NO, you should not be kept off Levo at all and you need to receive the correct starting dose, as well as receive med increases after 6 weeks. The problem with leaving it untreated is that you will get worse. Your thyroid is already struggling to function based on your minimal lab tests and your symptoms. Treatment helps keep everything from getting out of control, and it will get out of control if you continue to not be treated. You don't want your antibodies to keep rising, your FT3 and FT4 to keep dropping, and to feel even worse.
You have Hashimoto's thyroid disease and you have the symptoms that go along with it. You have symptoms of hypothyroidism and Hashimoto's, "Main symptoms are weight gain, low mood, joint pain, constipation, dry skin and losing hair.". These are ALL symptoms of hypothyroidism. Hair loss is a classic symptom. So is weight gain and constipation. Low thyroid leads to slow metabolism and slow digestion. You need thyroid medication and a new doctor.
I will take the test and go back. I cried when I came out of the drs which is not like me. Even my work colleagues who didn’t know about my meds said I seemed like my old self again (they knew about my surgery as I was off for 12 weeks). There is another GP who is more senior so I will see her. Thanks.
Such a pity your doctor knows nothing about thyroid. She sounds helpful. Asking for advice from an endo is bound to end in tears. Not only do they know nothing and think they know everything, but they are not thyroid-friendly, and would move heaven and earth not to diagnose hypo.
First of all, were both these tests done at the same time of day? What time were they done? Had you eaten.
You are hypo when your TSH gets to 3, but the NHS denies that! Anywhere else in the world you would be treated at three, and the doctor would understand that your TSH has reduced BECAUSE you are taking the levo, and that a reduction in TSH does not mean you no-longer need levo.
She is lovely but not very assertive so I will get an appointment with the more senior one for my next results. She was great after my hysterectomy. My tests were at the same time (8am) and no food. She said if I was in Europe I would be on levo.
OK, so that's good that they were both at the same time, both fasting and, presumably, for the second one you left a gap of 24 hours between your last dose of levo and the blood test. (Not that that would affect the TSH, but it would affect the FT4, should they ever decided to test it, if you took your levo just before the blood draw. It would give you a false high FT4.) So, you need to do all future tests in the same way, so that you can compare them.
Let's hope the senior doctor knows a bit about thyroid!
I picked up my slip to get my bloods tested and she is doing TPO antibodies, T3, T4 and TSH. I am going for the test a week on Monday which will be almost 2 weeks since stopping my levo. I have started having the pain in my hips and elsewhere. Is it normal to have this pain after not having levo for 3 days?. Thank you.
It would be normal to have symptoms come back after stopping levo, yes, so if hip pain was one of your symptoms, it wouldn't be surprising. But, 3 days doesn't really sound long enough for symptoms to start again. The half life of levo (T4) is 7 days. So, you won't have lost much after only 3 days.
Fleur2016, you are in the terrible position a lot off people find themselves. Having blood test figures that clearly show you're ill (and symptoms to match), but the bizarre system where doctors don't want to treat until you get even worse.
It's good to hear your getting the full thyroid panel (TSH, freeT4, freeT3), and your doctor realises that in other countries you would be getting treatment!
Unfortunately it's just a luck of the draw whether you do find a doctor who agrees to treat, or you end up having to wait around. I think you're doing the right thing by going in and asking questions, because I think it's a positive sign that quite a lot has happened, and you haven't just been sent off to get retested next year!
Thyroid illness runs in families, so your mother having it is significant. It's may also have been triggered by the hysterectomy, as hormone changes like menopause and pregnancy are common triggers.
My husband is going to come with me next time to try to explain how I am feeling and how much better I felt. I just hope she agrees to prescribe. It just seems so wrong my gp agreed to help then withdraws treatment when I know the trial helped. I will make sur I tell the new doctor about my mother again. Thank you.
I had my results today. My TSH is now 4.7 (she said it should be under 4.2) and my anitibodies were 1000 and she said the need to be under 200. I forgot to ask about the other results but she has started me on 25mg levo and full retest in 3 months (TSH, antibodies, f3 and f4 which I had this time). It is likely Hashimotos she said and my dose may need to go up but she doesn’t want me going the other way. To be honest I am just glad to be diagnosed and have meds again. I just wanted to say a HUGE thank you to everyone who has helped me and given me information and confidence. I am also going to continue to be 90% gluten and dairy free. Had pizza at the weekend and felt awful. Thank you.
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