Subclinical Hypothyroidism, Hashimotos, Levothy... - Thyroid UK

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Subclinical Hypothyroidism, Hashimotos, Levothyroxine.... is this normal?

Neesie_227 profile image
18 Replies

Hi! My doctor just put me on Levothyroxine for subclinical hypothyroidism. I've known for years that I have Hashimotos, but my thyroid labs have always been in the normal range, so it's been a watch and wait approach. My TSH was only slightly above the normal range (I think around 5.5) and T3 and T4 were normal. He started me on Levothyroxine .025 mcg, which I took first thing in the morning. The next morning, between 2 and 6 am, I kept getting jolted awake by an adrenaline like feeling. I attributed it to the Levothyroxine, because I never have this problem. I cut the pill in half the next day, and I was still jolted awake the following early morning with the adrenaline feeling. I want to feel better, but I'm scared this is is a reaction to the medication. Should I even be on it since my labs were so close to normal? I do have the typical hypo symptoms (no energy, I can sleep all the time, constipation, forgetfulness, low heart rate around 68- but this is only when I'm sleeping- otherwise, my heart rate is around 85 to 105). Any input is greatly appreciated!

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joeblo profile image
joeblo

my tsh is 5.2 and t3 and t4 are 'normal' and my antibodies tgab are 433, so hashimotos but my docs wont prescribe me anything, even though i have other symptoms/autoimmune stuff i.e raynauds. PLUS im hypermobile and have no knee reflexes, so i would be interested to see what people will comment about your situation too :)

greygoose profile image
greygoose

My TSH was only slightly above the normal range (I think around 5.5) and T3 and T4 were normal. He started me on Levothyroxine .025 mcg

You're hypo when your TSH hits 3. But the ranges are wrong, and nothing to do with 'normal'. So, you weren't just a bit over-range, you were hypo.

In doctor-speak 'normal' just means 'in-range', but, as I said before, the ranges actually have nothing to do with 'normal'. If you give us the numbers - results and ranges - we'll tell you just how 'normal' your T3 and T4 were.

Doctors have this weird idea that just because you're TSH is 'only slightly over-range' you only need a 'slight' dose of levo. They are wrong. The starter dose is 50 unless you are very young, very old or have a heart condition. 25 mcg is just enough to stop your thyroid's own production, but not enough to replace it, so it actually makes you more hypo. Don't be surprised if your TSH has gone up next time you're tested! So, cutting the dose in half really wasn't the right thing to do. I doubt it was the actual levo that caused the problem, more like the hypo itself. :)

Neesie_227 profile image
Neesie_227 in reply togreygoose

Thank you for your response. My TSH was 5.32 (0.450-45.000), T3 was 3.2 (2.0-4.4) and T4 was 1.15 (0.82-1.77). My Vitamin D was also very low 14.7.

This is very new to me. Could you please tell me why taking a low dose would actually make me more hypo? Also, from what I've read, being hyper causes anxiety, etc. This is all very confusing to me.

Neesie_227 profile image
Neesie_227 in reply toNeesie_227

Typo: My TSH was 5.32 (0.450-4.500)

greygoose profile image
greygoose in reply toNeesie_227

So, your FT3 was mid-range, which isn't too bad. But, your TSH was high and your FT4 was low. Even so, your starting dose should have been 50 mcg.

As I said, a low dose of levo will very often stop the hormone production of your thyroid, but not be enough to replace it. Imagine your thyroid was making 50 mcg T4 a day. You start taking 25 mcg. Your thyroid stops making 50 mcg. So, you now have 25 mcg less thyroid hormone than you did before you started taking levo. The less thyroid hormone you have in your blood, the more hypo you are.

Hypothyroidism can also cause anxiety. Many symptoms can be both hypo and hyper - like high/low blood pressure. Doctors think that hypos have low blood pressure and hypers have high blood pressure. But, hypos can also have high blood pressure. We have to be careful categorising symptoms like that. :)

Neesie_227 profile image
Neesie_227 in reply togreygoose

Thank you for the good info!

greygoose profile image
greygoose in reply toNeesie_227

You're welcome. :)

ShinyB profile image
ShinyB

Hi, I'm by no means an expert but my first thought was that you may need adrenal support. I looked at your profile and noticed you have also posted on the anxiety forum, which further made me think that.

There is a book by Dr Peatfield called 'Your Thyroid and How to Keep it Healthy' amazon.co.uk/Your-Thyroid-H... in which he discusses the link between adrenals and thyroid. I'm sorry I can't attempt to paraphrase it for you, but I'm struggling to think straight today. You could try using the search facility to look up thyroid and adrenals, to read some other posts about it.

Neesie_227 profile image
Neesie_227 in reply toShinyB

Thank you. And yes, I do suffer from anxiety too.

ShinyB profile image
ShinyB in reply toNeesie_227

It's the pits, eh? x

The adrenaline rush is often too little medication, not too much - your thyroid is crying out for hormones, bu the pill just doesn't provide enough, so the body makes adrenaline to keep you going . The usual starter dose for an adult is 50mcg. Thyroxine takes a long time to work as it has to be converted to the active thyroid hormone - t3 - in order to do anything in your body. thyroxine is a storage hormone and doesn't really make any difference until it is converted, so halving a pill will make no immediate difference as your body is working on what it got days ago.

in reply toAngel_of_the_North

Thank you Angel, reading these threads I usually learn something new!

Does that explain why I (and probably others) can do a physical task that doesn't need too much concentration, or go for a brisk walk, without much problem, but feel exhausted when I stop?

The adrenals kind of pick up the slack left by the thyroid, is that it?

Angel_of_the_North profile image
Angel_of_the_North in reply to

Pretty much, until they go on strike too.

Hi Neesie, Join the club! I hate the expression "Subclinical". It feels very clinical to me!

I was eventually given 25 mcg thyroxine, but only after phoning the doctor on a day my concentration was so poor I had difficulty stringing a sentence together. When tested,TSH was just under 6 . "Normal" TSH (for the local hospital lab - it seems they vary) is supposed to be around a maximum of 4.7, but the fact you feel anything but normal doesn't seem to matter! T4 was lowish but still "In range" (T3 not tested).

For a while there was an improvement, then symptoms started to get worse again, though every day seems different, and it was never as bad as at first. The next TSH (they didn't test anything else) was only slightly less, still over 5, so I was promoted to 50mcg. Due for a blood test in a week or so and can tell I need another increase - just hope the doctor will agree!

Write down a list of your symptoms and how they affect your life.

For example, I had to give up driving for a while (Partly because the bossy doctor forbade me to drive so strongly that I thought he meant for good!) and am still waiting to see if I can get my license renewed. The problem is that some days, or part of a day I'm OK, other times my concentration is too poor to risk it. If I wasn't retired it would have meant losing my job, which involved visiting people in their homes, and sometimes taking them out as well - maybe 2-3 visits in a day, or very occasionally 4. Exhausting and almost impossible by bus.

Neesie_227 profile image
Neesie_227 in reply to

Hi, Jnetti. Thank you for your reply! It is a struggle. I also have the mental fog and a lot of forgetfulness. So much so, that it scares me. I can be mid sentence, and forget what I was saying. I’m glad to know someone else is in the same boat as me. I am still afraid to start taking the Levothyroxine, but I’m not sure exactly why. I still feel like I need more information. There seems to be so much conflicting treatment advice. For instance, why do so many doctors state that treatment shouldn’t begin unless your TsH is greater than 10? My brain is so tired from trying to educate myself and make an informed treatment decision.

in reply toNeesie_227

Hi again Neesie, just a couple of comments on what you said above:

"I can be mid sentence, and forget what I was saying."

I get that often! It's just a symptom of low thyroid, you are not going crazy however you may feel sometimes. Most of my friends have learned to be patient and wait for me to get back on track. Brain cells need a lot of the energy released by thyroid hormones to keep functioning properly, and a lack of hormone means they are too "Tired" to work properly. That's why we need replacement hormones.

"why do so many doctors state that treatment shouldn’t begin unless your TsH is greater than 10?"

Because they are ignorant and don't realise how much suffering is caused to many of us when TSH is just a bit over range, and that the range itself is set too high in most cases.

I've learned from this forum that we vary a lot in our response to high TSH and low T4/T3. Some seem to cope with very high TSH, others (you and me and many here)suffer a lot when it's well under 10 or even "Subclinical". Apparently thyroid function is usually not covered very well in medical schools. So, unless a doctor happens to be interested in this branch of medicine or gets thyroid problems herself (women seem to get thyroid problems much more than men) and is forced to study it, she will usually not be aware. The problem is that there is too much dependence on blood results (TSH is apparently quite variable and not a reliable indicator of thyroid health) and far less attention to a patient's symptoms - how we feel.

And to be fair, a GP has to be an "Expert" on "All" illnesses and their treatments, while often struggling with a heavy workload and bogged down in endless red tape and paperwork as well. We after all are forced by this disabling condition to become our own experts on this one thing, not hundreds or thousands of illnesses and their treatments.

Not excusing the doctors, but maybe WE need to educate them about thyroid issues!

Of course the very implication that they don't know everything there is to know about health, however carefully and tactfully we try to explain, makes some doctors angry and resistant. But some do care enough to seek the truth.

Phew! This has turned into an essay, and my brain is tired already from concentrating so hard!

Anyway, hope it helps xx

Oh, just remembered, not sure if anyone has already said it, and can't cope with reading the whole thread again). Apparently not all brands of Levothyroxine suit everyone. I've been put on the Mercury brand which seems OK, but folks here say that many people get a bad reaction to the Tevo brand. Check the packaging. You can ask the pharmacist for a different one if it makes you feel worse. But give it a go and don't be scared. It will take a while to feel better anyway, and you probably won't feel much difference for a week or so, especially on such a small dose.

Neesie_227 profile image
Neesie_227 in reply to

Thank you for the encouragement! It helps to know I’m not alone and I’m happy to have found others who understand.

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