I've been on levothyroxine for 2 years, my doctor keeps upping and downing my dose between 100-150mg as I have constant symtoms of trembling like I'm going to colapse through hunger. These symtoms don't change regardless of what dose I'm on although the doc is confident they are related to my thyroid. She's just dropped me back down to 100mg and ordered some t3 tests. I'm at my wits end and so tired of feeling like this. Any help would be hugely appreciated.
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Evie123456
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Change your doctor as she is another who is only concerned whether the TSH is in range or not, and continually adjusting the dose is doing nothing for you whose clinical symptoms haven't been resolved.
If you can get the ranges of your blood tests it would be helpful. The reason being that labs throughout the country use different machines so ranges help.
Ask your doctor to do a Free T3 blood test as that would tell you if you are able to convert levothyroxine to T3. T3 is the active hormone required by all of our receptor cells and the heart and brain contain a lot. If T4 isn't converting sufficiently or you're not on an optimum dose you will not have enough T3 to do its job.
When you go for a blood test for your thyroid hormones, get the earliest possible appointment and fast (you can drink water). Leave about 24 hours between levo and the blood test and take levo afterwards. This helps to keep the TSH at the highest as it changes continually throughout the day and I doubt the GPs are aware of this.
You could discuss the link below with the GP with regard to the Free T3 blood test.
If she has already lowered your dose and your still not well make a new appointment and ask if you can have T3 added to your T4. It might make a big difference. Follow the advice re getting a blood test for your thyroid hormones.
Before levo and the blood tests were introduced we were given natural dessicated thyroid hormones which was raised gradually until we were better with relief of symptoms.
Has she checked your Vitamin B12, Vit D, iron, Ferritin and folate? If not ask for these to be done as we can be deficient and can cause problems too. Always get copies of your blood tests for your own records and so that you can post if you have a query.
Thank you very much for your reply, I think I've seen all of the doctors in my surgery now and unfortunately they all hold the same opinion.
I have a print out of my results here they are more detailed -
02/10/15
Tsh level 0.05 ( range 0.30-6.00)
Free t4 level 23.4 ( range 10.00-22.00)
28/07/15
Free t3 level 5.0 (range 3.60-6.40)
I've been tested for everything under the sun - iron, vitamin deficiency, diabetes... They even ruled out HIV! Finally after 2 years of tests and and a referral to a dietician my doctor has concluded it is connected to my thyroid although they don't seem to know how, sometimes feel like I'm banging my head against the wall with them!!!
Sorry for the rant, just fed up of not feeling better. 😢
Evie, FT4 is slightly over range and the dose reduction may help. Keep a diary to track whether there is any improvement on the reduced dose. If the reduction means you have a return of hypo symptoms it may be worth trying 100/125mcg alternate days.
Even though on paper your results look o.k. the fact that you aren't yet feeling well after 2 years would indicate you are not yet on an optimum.
I think adjusting the doses hasn't been helpful so I would ask if you could have the addition of 20mcg of T3 and she has already reduced your T4 by 50mcg so that would raise your dose up by the equivalent of 60mcg levo.
I think your TSH is fine and would refuse to reduce your medication unless she adds 20mcg of T3 on a 3 months trial.
Evie, do you have the ranges (figures in brackets after results)? FT4 looks a little high but FT3 5.0 was good.
I had constant internal and external trembling which was caused by Levothyroxine. It improved when T3 was introduced but can still be a problem occasionally. I've wondered whether it may also be due to low blood sugar at times as eating a piece of fruit, toast or biscuit can improve the internal trembling.
It does very much feel like low blood sugar I usually get it a couple of hours after eating and have to eat something so symtoms subside... Sugary foods bring me back up straight away but make the problem worse long term so I try to avoid sugar completely. I also find the less carbs I have in my diet the less severe the attracts throughout the day.
Also the earlier in the day I start eating the worse they get.
I've had all the diabetes tests though and they all came back within the normal range.
I have asked the doctor about different types of medication but they are unwilling to prescribe anything other than levothyroxine.
Also I was wondering how I would go about switching medication myself, I've read lots on her about natural thyroid compared to levothyroxine. Is it easy to obtain and is it expensive?
Hi - perhaps it looks like you are converting the T4 (Levo) to T3 so everyone says 'this patient is ok she converts t4 to t3, it must be something else'. May be you only able to convert a small amount of the t4 you are taking and the rest you store and it is the high t4 that makes you feel very unwell, along with perhaps not enough t3. This is only an idea.
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