Help me understand Thyroid Tests please

Hi, new here. Wondering if you all could help me with a possible thyroid issue. I'm M, middle-aged, recently diagnosed with Type 1. I've been feeling like crap for years, and my doctors were of no help with diagnosis. Basically, they ran some tests for me and told me to see a psych doctor.

Then, I discovered by chance that I had really high blood sugar for a long time -- finally doctors diagnosed as Type 1 auto-immune diabetes. The elevated blood sugar and triglycerides were always there on the medical chart, but the doctors never thought it of significance. Thanks for being useless, Docs. I've lost hope in getting anything from them other than test and prescriptions. Now, I turned around my high blood sugars to near normal, mostly through diet, and a few units of insulin per day. I feel much better in some ways, but in other ways, I have some lingering issues that the doctors are again ignoring.

I'm wondering if I have a thyroid problem, for several reasons. One is that many other people with diabetes are saying online that they are hypothyroid or have been diagnosed with Hashimoto's. The other reasons:

- I get these severe cold spells, seemingly at random -- extremely cold for about an hour no matter what I do (more clothes, hot shower, pacing around), then it just fades away.

- My memory and brain don't feel like they're working well at all. I forget stuff instantly, not being nearly as productive as I used to be.

- I sleep. A LOT, more than I am awake, for weeks at a time.

- I get this disturbing internal vibration that is hard to explain or convince other people about, but I have seen others talk about it, too, which lead me here:

healthunlocked.com/thyroidu...

Anyway, the Thyroid tests I have had are a few years old. I'm going to the doctor soon and going to insist that I get a full Thyroid check. I'm not sure what to ask for. I think it's these 3 tests -- TSH, Free T4, Free T3. Is that right?

Also, the past results I have are here. I do not know what the numbers mean at all. Can anyone explain? I'd like to be able to discuss this but I don't know much about it:

2005:

TSHq = 2.8 uIU/ml

2010:

TSHL = 4.85 uIU/ml [HIGH]

T4,Free (Direct)L = 0.98 ng/dl

2011:

TSH = 3.43 uIU/ml

T4,Free (Direct) = 0.9 ng/dl

Running out of time to figure this all out before my life completely falls apart. So, thanks.

12 Replies

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  • Hello GawdHelpMe,

    Welcome to our forum and sorry to hear of your health issues.

    Type 1 diabetes is an autoimmune disease in which the immune system attacks the cells in the pancreas that make insulin. One autoimmune disease can predispose one to develop others and type 1 diabetics is commonly connected to Hashimotos, where the thyroid gland is mistakenly attacked. This leads to a decrease in thyroid hormone known as hypothyroidism and requiring thyroid hormone replacement.

    Quoted from link below which is a very interesting read.

    ...[......Unmanaged pro diabetes, both type 1 and type 2, may induce a “low T3 state” characterized by low serum total and free T3 levels, increase in reverse T3 (rT3) but near normal serum T4 and TSH concentrations.....

    ...... Insulin resistance and β cell function are inversely correlated with thyroid stimulating hormone which may be explained by insulin-antagonistic effects of thyroid hormones along with an increase in TSH. The higher serum TSH usually corresponds to lower thyroid hormones via negative feedback mechanism....].....

    Results ... TSH looks a little high & fluctuating but I don't understand your T4 results as mine generally read different to these but someone else might be able to advise further.

    Can you supply ranges (numbers in brackets) for all tests please?

    All your symptoms could be attributed to low thyroid hormone. Ask your doctor to test you for TSH, FT4, FT3 and thyroid antibodies TPOAb and TGAB as this would indicate Hashimotos, and cholesterol as this could well be high too. (FT3 is extremely useful in determining thyroid issues and especially in view of statement quoted above but GP's rarely test it but you can ask..! ! ..).

    Have you had your BP checked recently?

    Also Vit D, Vit B12, folate and ferritin as people with thyroid problems are often low in these and deficiencies can effect thyroid function.

    Post all results with ranges ( numbers in brackets).

    My husband has been an insulin diabetic for over 50 years. He is healthy, well and thankfully has suffered none of the usual conditions (eye, kidney, neuropathy problems) that can accompany long term diabetis. We put this down to diet ( slow acting carbs, protein, fats, plenty of fruit & veg) & healthy life style. We have always found eating protein with every meal to be beneficial. Also balancing fruit/vegetable sugars with protein... ie apple with cheese, berries and yogurt, satsuma & brazil nuts .... as protein takes longer to digest and so help avoiding insulin spikes.

    I have Hashimotos and have found this diet to be beneficial too but had to go totally gluten free this year to successfully suppress autoimmune responses.

    Well done for the success with your diet....... its amazing what food can do..! !

    As Hippocrates said. ..... .. "Let food be thy medicine and medicine be thy food."

    Hope you feel better soon,

    Flower

    Link explains connection between diabetes & thyroid issues

    ncbi.nlm.nih.gov/pmc/articl...

    Link explaining hypothyroidism

    thyroiduk.org.uk/tuk/about_...

    Link explaining Hashimotos

    thyroiduk.org.uk/tuk/about_...

    Link giving details for private thyroid hormone testing. Many members do this when GP's are uncooperative.

    thyroiduk.org.uk/tuk/testin...

  • Hi Flower,

    Re units for Free T4: The range is 0.8 - 1.8 ng/dL

    So GHMe is close to the low end of the range, at ~0.9 ng/dL.

  • LAHs,

    Lab ranges vary one lab to another (and not just in the units used). For example, another lab which offers a direct T4 test sets their adult range as 0.8-2.7 ng/dL.

    questdiagnostics.com/testce...

    However, I don't think the exact range is particularly important here - as you imply, the results are clearly indicating too low FT4 and consequent too high TSH.

  • Maybe I mis understood your question.

    I always have difficulty getting a feel for pmol/L and nmol/L because my labs (quest diagnostics) gives us our results in ng/dL. I can only get a feel for the English units if they include the range and I thought that is what you were asking, and hence my answer.

    Re differences in ranges, we have a joke here in the USA that you might be normal in California but Hypothyridic in Ohio.

  • Hi GawdHelpMe, I'm sorry you're going through all this! It's miserable, isn't it.

    I would say you are hypo. A TSH of over 2 means that the gland is struggling - an absolutely normal TSH is between 0.8 and 1.25 - and a TSH over 3 is hypo. But doctors Don't know this. They have their instructions and they are incapable of thinking outside the box. Even with a TSH of 5 they would say you're sub-clinical, when that is not the case at all. But you probably have antibodies, as flower explained, so that might help you get a diagnosis.

    However, you must insist on having them both done - TPOab and TgAB. For some strange reason, known only to themselves, doctors only order the TPOab. But that could be low, whilst the TgAB is very high (my case). And it still means that you have Hashi's. So, you need them both done.

    But just a word of warning, whilst we know that high cholesterol means hypothyroidism, doctors just see it as an occassion to push statins on you. No way should you accept statins! Stand your ground. Statins are not recommended for hypos - and they're down-right dangerous for everybody! But we won't go into the politics of statins here! lol

  • It's 4 years since you last had a thyroid function test, and the one you had done in 2010 was high. The other results were at the high end of the range too, and anything over about 2 should be kept an eye on. Get your doctor to retest you, and have the test first thing in the morning, without eating beforehand.

    The active thyroid hormone, T3, varies throughout the day and gets consumed by the body when we exercise. Do you find these episodes of coldness tend to happen after physical exertion? Normally our bodies just make some more T3 out of the T4 that our thyroids produce and is floating around in our body waiting to be used, but if your thyroid is not functioning properly (often but not always due to antibody attack) then there won't be enough T4 around. It may then take your body a couple of hours before it can make the T3 your body needs. This may account for your episodes of coldness. I'm afraid that if your thyroid is failing these episodes will only increase unless you take thyroid hormone replacement.

    Good luck, and if this is a thyroid problem, which seems very likely, the good news is that once you are taking the right dose of medication you will feel a whole lot better. It might take a year or so to get there though.

    If you do have the auto-immune version of hypothyroidism you will find your thyroid function diminishes over time so that you need to see the doctor regularly for dose increases, to keep your TSH result at or below 1, depending on your symptoms. Eventually your thyroid will give up altogether and you will reach a 'full replacement dose' at which point you will be able to leave your doctor in peace!

  • eeng,

    Do you know if there is a definitive 'full replacement dose' or does this vary from person to person?

    I ask because I have been hypo for 16 years now and I reach my current dose over 14 years ago (275 mcg per day of Levo). As you say thyroid function diminishes over years, I am wondering if I reached this 'full replacement dose very quickly (ie 18 months after diagnosis) and this is a reflection of how long I had been ill before getting treatment.

    I was told nothing about my condition 16 years ago and have learned so much in the last 4 months on this forum. I've recently had my blood tested privately by Blue Horizon and only then found out I had high level of both thyroid anti-bodies. I don't know if that means I have had Hashi's all that time or if I'm now developing Hashi's as well.

    Thankfully I have now got my first ever Endo appt in Oct 19th, so I'm hoping to get some answers (not holding my breathe tho'!!).

  • Don't give up! Push the doctor for all the tests! I have had type 1diabetes since the age of four and it is linked with all the other autoimmune disorders. I have hypothyroidism for a long time. Hashimoto wasn't found until I had a thyroidectomy! You have to push, despite the horrible tiredness. Wishing you well x

  • Just sent him my request, thanks.

  • I think you would benefit from finding a good Functional Medicine Practioner. From my experience GP's don't understand Thyroid issues.

    There are two books that might help - Dr Isabella Wentz, Finding the Root Cause and another called Stop the Thyroid Madness, can get both on Amazon.

    You can also look her up on YouTube.

    Have you gone gluten and dairy free ? I really recommend this, even if you try it for 4 weeks as diet plays a massive role in thyroid health.

    Best wishes

  • Hi GHMe,

    There is a lot of excellent advice here and I only have a small comment to make. Your last sentence I completely understand. I was on a lousy drug at the wrong dose for 2 1/2 years. When my idiot doc said I should reduce my dose because my TSH was too low - I did so because I thought maybe she could be right. It nearly killed me! One day I thought I would have a stroke or drop dead within a couple of weeks so I jumped in my car and knocked on the door of other doctors and the insurance office and insisted that I got sensible care because I thought that I didn't have long to live. Fortunately I got a sensible (not excellent) doc but I remember sitting in that doc's office thinking, "This is my last chance, if she can't fix it I've had it."

    And now I am OK, so don't give up, change docs if you have too, don't be shy.

  • Thank you all for your information. I wish I had more specifics, or more recent results to share. I have contacted my Dr. via the hospital's messaging system to request TSH, Free T4, Free T3, Vitamin D and cholesterol.... Waiting for a reply.

    I may go to Urgent Care on Monday, though, because I have also been having a feeling of pressure at the base of my throat like something is preventing me from swallowing and breathing easily. It is putting me into a panic mode when I go out away from home.

    Looking at diagrams today, and I'd have to say that feels about right where my thyroid is, especially on the right side.

    IF this is a developing goiter, and I get the proper meds, would this feeling of pressure on my throat go away? And how long does that take, if so? (A lot of assumptions here, obviously.)

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