I am at my wits end. I don’t remember the last time I didn’t feel tired.
In March 2018 my blood results from my endocrinologist were as follows..I was on .125 synthroid
TSH .48 (.45-4.5)
Free T4 1.53 (.2-1.77)
Free T3 2.7 (2.0-4.4)
I asked if she would add T3 to boost it up into the higher range and she said “We don’t prescribe that.” That was my last visit there.
My primary care added .5 mcg cytomel.
Blood results in August 2108
TSH .016 (.45-4.5)
Free T4 1.89 (.2-1.77)
Free T3 3.3. (2.0-4.4)
Ranges same as above.
She lowered my synthroid to .1 and told me she thought this was the perfect dose and come back in 6 months
Results for January 2019
TSH .075 (.45-4.5)
Free T4 1.54 (.2-1.77)
Free T3 2.9 (2.0-4.4)
My iodine was on the low side 43.5 (40.0-92.0) in April 2016 it was 74.2
She suggested supplementing iodine and next visit she would probably reduce my synthroid again. The iodine gave me palpitations so I stopped taking it.
Results for last week
TSH .057 (.45-4.5)
Free T4 1.48 (.2-1.77)
Free T3 2.8 (2.0-4.4)
Iodine 43.3 (40.0-92.0)
This time I saw the PA and she freaked out over my TSH. She said she is lowering my synthroid. Alternating .1 one day and .88 the next day. Not sure what this will accomplish. I have also recently had a nuclear stress test and was told the bottom part of my ekg was abnormal during the treadmill part. The cardiologist wants to do a heart cath even though she said 60% of the time it’s nothing. I really am leary of doing this test with my thyroid out of whack. Thoughts on all of this? Thanks in advance. You guys rock.
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Suzyjul
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Do you have Hashimoto's diagnosed by high thyroid antibodies
When were vitamin levels last tested?
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
Low vitamin levels are EXTREMELY common especially with Hashimoto's
I just dug out all of my old records from the 80’s. My original diagnosis was Plummer’s disease...toxic multinodular goiter. Not Graves. I believe somewhere along the way I was told it was the same thing. Probably by one of many doctors I’ve seen that don’t know what they are talking about.
Thanks for your response. I neglected to include that I was diagnosed with Graves’ 30 years ago and had RAI. Both times she has tested my B12 it was high. 1769 (232-1245) She was not concerned. I still take it. My vitamin D and D3 we’re both 46 with no reference range. I take vitamin D daily. My TPO was tested in February 2016 and was 9 (0-34) I do not see a test for TH thyroid antibodies. Hemoglobin 13.7 (11.1-15.9) Hematocrit 39.2 (34.0-46.6) folate >20.0 (>3.0) also no test for ferritin. My bloodwork was done fasting 24 hours after last meds.
The ranges are in the first set of results and are the same for the others listed.
Are you saying I need more than the .5 mcg of T3 I already take?
I am in US.
Thank you so much for the links. Much good info.
I moved to the area I currently live a little over 4 years ago. I am on my 4th primary care dr. The endocrinologist I saw was worthless. I have stayed with my current dr for 2 years because it is exhausting to start over. The endocrinologist I saw did the adrenal test and it came back fine.
Just a minor comment. Do not feel embarrassed about changing doctors, I got through about 7 before I found one who would prescribe NDT and didn't mind me fiddling with my dose until I hit the right level. I can't even remember the names of the docs I've had who were severely under educated in thyroid matters. How you feel is the best indicator of the right dose. I am in the US and I eventually managed to get a doc who would prescribe NDT. If you can find even ANY doc who will give you a prescription (like alternative medicine or some such) then call Forest Labs (the manufacturer) who can fill it for you or suggest a source close by to you . The reason I suggest NDT is that it comes in a reasonable proportion. That way you are not juggling two entities, you will be taking a 3:1 or 4:1 ratio, you increase or decrease the dose and it all goes up and down together. (btw, 3:1 is the pig ratio and 4:1 is the human ratio. I think Forest takes the pig and adds T4 to get it to 4:1)
I did find a dr that prescribed NDT and was on for a while. It was a generic. When my insurance changed they only provide Armour. (I have ChampVA insurance and maintenance medication is free) Something in the Armour didn’t agree with me so I went back to synthroid. Maybe I should consider paying out of pocket for the generic again.
That's really sad that you couldn't stomach Armour. You might want to call them (Forest Labs) and ask what fillers they do have in their pills - since I think they have the least fillers of all of them. At least you will know what to avoid in other brands.
Lowish iodine should not be a priority as you are on T4 meds already and you don't have a functioning thyroid to utilise it anyway.
I would be more worried about low Selenium ( needed for conversion), low Iron, even low Zinc and Magnesium can be a problem as they are needed for the adrenals ( along with vitamin C and B vitamins) and help lower inflammation. Your doctor seems to lack the necessary knowledge to help you with your low t3.
Have a look into adrenal insufficiency which always causes exhaustion and how it relates to poor t4 to t3 conversion; ' Some adrenal hormones assist in the conversion of T-4 to T-3, and perhaps assist in the final effect of T-3 on the tissues. Some scientists believe that even the entrance of thyroid hormone into the cells is under the influence of adrenal hormones. ' taken from this link..
Confused why she would be freaked out by a tsh of 1.48. That is unless she wanted to reduce it further. More like <1 is where is comfortable. So ruddy shortsighted it’s ridiculous. Mine is something like 0.02 by the way.
I'm in the US and our Endos and Primary docs here freak out over very low TSH regardless how it got their and how you feel....I say hang on tight switching of the doses will send your body for a loop. I learnt the hard way by allowing these medical knuckle heads to change my doses because they kept telling me I'm going to die of Heart disease and my bone are going to crumble.
I went from fit to fat in 60 seconds flat with constant dose changes.
It is so frustrating! 20 years ago we were moving out of state and my gynecologist offered to do my thyroid bloodwork (which was only TSH) so I wouldn’t have to go to the endocrinologist. My TSH was high so she told me my medication needed to be reduced from .1 to .88. She said make sure you get it tested when you get to your new location it might need to be lowered even more! I couldn’t get an appointment with an endocrinologist right away so I went to a medical clinic. The dr asked when the last time I had a scan of my thyroid. I told him it had been years. So he had me go off my medication for 30 days so I could get the scan. When all was said and done he told me my thyroid was fine and I didn’t need medication anymore!! Of course when I finally did get in to see the endocrinologist he told me how wrong all that info was! This was before the internet when you just listened blindly to what these idiots told you. It took me a year to get over that episode.
It's true and so sad. I just had a thyroid cancer recurrence scare (it's wasn't) but I spent the past 2.5yrs fighting endos for thyroid ultrasound since I had thyroid cancer they would tell me your low risk you worry too much (had ovarian cancer 15yrs ago) I hardly think I'm low risk. Anyway now I have to have US every 3 months because I have suspicious lymph nodes....they are going to kill me.
Thyroid disease is no joke and it's absolutley a life sucking disease....I hate it everyday.
The struggle is real. I have had 2 melanomas removed and was told by the dermatologist don’t skip Pap smear, mammogram, eye exams. The gyno told me melanoma doesn’t spread to your female parts so you can go every other year for pap. Wishing you well.
My TSH is 0.005 and I feel well self medicating with NDT and no GP or endos they just kept me feeling ill on Levo. It has taken me nearly two years but I have my dose correct and feel great as you have no thyroid the GP is paranoid regarding your heart. I recently had my heart checked and Dexa scan for my bone density and both are very good for my age which is 72 years.
The majority of Doctors and endos just do not think for themselves just read the blurb, which is wrong anyway.
Graves is an autoimmune disease and as such it is for life, it's in you blood and your DNA.
There is probably some genetic predisposition and read it can be triggered by a sudden shock to the system, like a car accident or an unexpected death.
The thyroid is a major gland and when it comes under attack from your anti bodies the symptoms are serious and considered life threatening. Removing the target of the attack, by burning and damaging your thyroid with RAI doesn't actually solve the under lying problem with your immune system, but renders you hypothyroid, some symptoms disappear but the you now have a new set of hypothyroid symptoms to contend with, and possibly thyroid eye disease.
A fully functioning working thyroid would be supporting you daily with approximately 100T4 + 10 T3. so it just seems sensible to me that both these vital hormones be on the patient prescription for if, and when needed.
Some people can get by on T4 alone, some people at some point in time simply stop converting the T4 to T3 and some people simply need both these essential hormones dosed and monitored independently to bring them into balance and to a level of wellness acceptable to the patient.
It is essential that you are monitored on T3 and T4 blood and not a TSH blood test.
Graves patients can have antibodies sitting on their TSH giving false information, and usually a false low., giving the impression you " look " over medicated when in fact the very opposite is probably more true. It's a bit like knowing you need to put petrol in your car, but the dashboard gauge is showing a full tank, your feedback loop, your gauge broken.
You might to take a look at the following books :-
Graves Disease A Practical Guide by Elaine Moore. This lady has the disease and was treated with RAI. She found no help back in the late 1990's so wrote a bool to help others.
She now runs a very well researched and respected website n the States.
Tired Thyroid by Barbara S Lougheed is another American lady with the same disease and treatment. Her book amongst other things, details the over reliance put on TSH results and believe she now also runs a blog.
Your Thyroid and How To Keep It Healthy by Dr Barry Durrant - Peatfield is an excellent book on all tings thyroid. It's a major gland responsible for full body synchronisation including your mental, physical, emotional, psychological and spiritual well being, and since we don't now have this wonderful little gland sorting us out, we need to work extra hard at understanding all that it does so we can try and compensate for the loss.
I am with Graves Disease post RAI in 2005 and having been very unwell and am now self medicating with Natural Desiccated Thyroid and doing ok.
I dug out all of my old information and when I was diagnosed i was told it was Plummer’s disease. Toxic multinodular goiter. One of my doctors along the way told me that since I had RAI I was more likely Graves. Even though for years before my RAI one side was working and the other not. It did coincide with a very stressful time in my life. So now, with the info you related I’m not sure.
Well Graves is auto immune and there will be anti bodies should you wish a blood test to confirm this diagnosis. It must have been a terrible time and when so ill and vulnerable one doesn't general question the doctor but trust they know better than you.
I was diagnosed and nuked - I don't have any proof that I even had Graves Disease, I simply trusted what I was told was correct, is too late now, we are where we are.
Either way having had RAI will have reduced your thyroid hormone production down and presume now your struggling more with the management of the hypothyroid symptoms rather than with Graves, though an endo should take into account the fact you have Graves and received RAI treatment.
I read Graves tends to wax and wane, with no two patients presenting in the same way, which makes it very difficult to treat or understand, it being a more individual centred disease which obviously, wouldn't be covered in any depth in mainstream medical school.
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Update on Labs - What is Going On? :-)
Thoughts on my labs?
Is my "high" TSH a problem? 
