I originally went to the drs with fatigue, anxiety and stubborn weight gain.
I’ve been put on Levothyroxine 25mg for 8 weeks with the view I may come off it when I go back in 8 weeks. Does this happen? I currently feel dreadful, I don’t feel safe driving as I’m so tired and I have 3 young children to look after!
Does anyone have experience on why my levels have changed so much in 6 weeks? Is this typical? My dr was perplexed as my antibodies came back negative.
Is there anything else I can do to help myself. I ran a half marathon earlier this year, I exercised regularly but now I’m struggling to tie my laces let alone run!
Looking back in my notes from years ago my TSH was always around 4 but reported as normal
Thanks for any advice
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Cel_76
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However, I’ve been recently put on Levothyroxine (March) when my TSH was 12.2, and I felt dreadful so with a TSH of 16.45 god knows how you managed.
The advice on here was to make sure I started on 50mcg of Levothyroxine, not 25mcg. 25mcg is for elderly patients or with heart conditions.
You are then suppose to have a further blood test after 6 weeks, with another further increase of 25mcg.
To feel well it’s been advised your TSH should be 1 or below, T3 5-5.5 and T4 19 or 20.
What you will find is that as soon as your results are within lab ranges your GP may stop increasing your dosage, whilst you still feel awful.
Make sure blood tests for thyroid taken as early in the morning as possible and don’t take Levothyroxine before your blood test. Just drink water as well.
I also see your GP is not testing T3 either. Most don’t. Can you request this?.
If they refuse, pay private for thyroid testing, blue horizon or medi checks offer this. You can pick a hospital on there list to draw the blood or arrange a visit to your home.
It’s important that your vitamins levels are good as this will not help.
Thank you for your reply. I feel like I need to just pull myself together, yet I’m unable to, I hate pestering the Drs but I think I’ll make an appointment and discuss the possibility of increasing the medication. I think my antibodies came back negative, if it’s the Paroxidase Antibody?? I’ll definitely get tested for the T3 and vitamins. Thanks again
There’s no way you will be able to pull yourself together without the help of medication.
Your burning yourself out, or rather your thyroid is.
Your not being a pain either, you’ve gone to the GP because you don’t feel well.
Don’t be fobbed off either with its anxiety, all in your head, and don’t accept anti depressants either.
One GP told me within my surgery, it was anxiety and all in my head. I off course had done my research beforehand and knew it wasn’t.
Luckily, I took my husband with me to that appointment as I could hardy walk, I was like a zombie and no way I could register anything she would of said to me.
In fact, my hubby was so disgusted with her, he grabbed me and said we are leaving, we will sort ourselves out.
Several weeks later I went to my allocated GP, not feeling any better and he ordered bloods. This is when my TSH was 12.2 amongst others Thyroid results out of range.
I had also previously paid to see an Endocrinologist, that was a waste of money and time as well, as despite diagnosing me with Hashimoto’s said no medication would help.
The best advice I have had was from this forum and another thyroid forum.
I took this to my GP (below) when he wanted to start me on 25mcg. Once I showed him, he agreed to start me on 50mcg.
You need to do as much research as possible on your condition. As GP’s really don’t know enough and to my own personal experience my Endocrinologist didn’t either.
Another piece of advice, don’t be fobbed off by the receptionist when you ask for your blood results.
Ask for a copy of the lab results that include ranges. They can no longer charge you, or better still, register to be able to access your own blood results (I can do this at my surgery)
The trouble is if you have anti depressants o going anything that is wrong withyou thereafter whether pain or fatigue is in your head and theysend you away . This when i have only had this range of increasing symptoms for about 6 months despite years of depression.
If it’s really unbearable then go back and ask for a dose increase. Your TSH was high.
Unless you are over 50, have a heart condition or frail then 50mcg is the standard starting dose
Bloods should be retested after 6-8 weeks
Did you have Thyroid antibodies tested? If not request that they are. If Thyroid antibodies are high this is autoimmune thyroid disease also called Hashimoto’s. Most hypothyroidism is due to Hashimoto’s
Also request vitamin D, folate, ferritin and B12 are tested
Unless you have temporary thyroiditis, you will most likely need to be on levothyroxine long term.
Thank you for replying. I believe my antibodies were negative as the lab tested Paroxidase Antibodies. My dr thought this was strange as he expected me to test positive for autoimmune problems. I am under 50 with no heart problems so I’ll go and have a chat about if I can increase my Levothyroxine. Thanks again
As mentioned a minority will have TGab raised rather than TPOab but doctors think TGab is only relevant for thyroid cancer which is not true. In Japan’s guidelines they indicate that Hashimotos will have TPOab and/or TGab raised.
Also mentioned was that a minority can have Hashimotos without either raised but are diagnosed instead by an ultrasound.
Yes, overwhelming. This is actually a 20 part series of Reasons of Low thyroid. Functional doctors will try to find the cause and treat it while conventional doctors only try to replace thyroid hormone. I guess it would take too much time and effort to do otherwise. If your motivated, though, you can do some things yourself revising your diet or taking supplements, etc.
Check out thyroid uk and become a member. They keep a list of endocrinologists with peoples experiences and you can ask to be referred to one of those. Above all please don’t feel you are a pain and be fobbed off. It’s really difficult when you feel so bad but it won’t grt better it will get worse so you need to read up and push hard for what you need. Keep a symptoms dairy. And it is worth taking your temp and pulse at rest before you get out of bed. These are other indicators for your thyroid. Again you can google that or read about it on thyroid uk. Good luck x
About the running, exercise will deplete your T3 even further and it will take you much longer to recover if you keep trying to run. I would tell myself that I'm having six months off, give yourself permission. In the long run, you will feel better for it.
It’s such a viscous circle. I’ve put on weight and want to exercise more but feel shattered. Exercise also lifts my mood which is certainly lacking at the moment too. It’s starting to feel like a cruel affliction
Hi Cel_76. All I can say is that, based on my own very limited experience & knowledge, I was diagnosed with hypothyroidism some months ago & I have the antibodies. My TSH level then was 8. I was put on 25mcg Levothyroxine for 6 weeks. The next blood results showed an incredible drop to 0.5 TSH. So my GP took me off LT altogether. 6 weeks later my TSH had shot up to 24! So guess what? I’m back on LT at 50mcg and waiting for the next blood test! So believe me when I say I know how bad you’re feeling! What I have learned from this website is hypothyroidism doesn’t go away, so stopping LT is a recipe for disaster. Secondly, make sure you fast before your blood test and don’t take LT until afterwards. Good luck!
Hi Cel76, I feel so sorry for you with three young children to look after. I was diagnosed with hypothyroid around the menopause, although I had had symptoms since my youth and had been tested before, but had always been within "normal range". I've been on Levothyroxine 125mcg for about 12 years, and up until recently I had felt much better. Having some problems now, but I'm 62, so that's probably linked to the ageing process and my body needing an increase in Levothyroxine.
Your current dose is very low and, although this is a bit controversial, you could probably have your bloods checked every three to four weeks initially and titrate your dose upwards until you get nearer to normal range (when you should start to feel a bit better), then you should probably leave the blood testing for six weeks.
This forum recommended that I have my bloods checked by Medichecks, and I've been doing that, because, like you, I hate pestering the doctor. I initially had the Thyroid Ultra test when it was on special offer of £59 (which it is often - other people on this forum will be able to advise you) which checks all the thyroid hormones, antibodies, vitamins and minerals. Since then I've done the Thyroid Monitoring test when it was on special offer of £29 (again, it often is) which checks just the TSH, T3 and T4.
If you can afford it, it's worth it, if not, then you'll have to get over not wanting to pester the doctor. I work as a Community Nurse and I know how stubborn some GPs can be, but they're not experts, so hopefully you can find one who's ameniable to someone wanting to take control of their own health. Good luck. Hope you feel better soon.
Thank you for this info. I am so overwhelmed by all the elements. Even googling blood tests left me confused. I will use the ones you had as a starter. Thank you
Don't feel too overwhelmed - that's part of the brain fog caused by hypothyroidism. Once you get your dose increased a little bit, you'll start to feel better and all will become reasonably clear.
You've been bombarded with all sorts of information about antibodies, vitamins, minerals etc, but before you start worrying about anything else, you need to get your Thyroid Stimulating Hormone (TSH) down to a reasonable level (around 1), and when that happens, the thyroid hormones (T3 and T4) will hopefully regulate and you'll start to feel much better. The TSH is the hormone that's produced in order to stimulate the thyroid into producing the necessary hormones. If the thyroid isn't producing enough hormones, the TSH will increase in order to stimulate the thyroid to increase its hormone output. So once your TSH is down and your thyroid hormones are up, you should start to feel better, and then you can consider whether there's a need to check out all the other stuff.
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