Subclinical, being baselined (awaiting tests), trying alt therapies; don't want to interfere with diagnosis (chronic migraine/malaise)

[Sedgie]

Hello, I have just joined and I am having my thyroid baselined after a TSH of 5.5 and a T4 of 14.5 (thereabouts, TSH just over upper limit T4 was low end) I am in the UK. My dr was prompted to test because of numbness in foot and tingling along with head and neck pain accompanying my chronic migraine, he suspects Hypothyroid autoimmune illness he doesn’t think my results are why I feel ill. Well I do. I never used to feel tired; I never used to get headaches or any pains in my body. ( have always felt the cold, and periodically anxious and suffered with period problems) I do not have a weight problem. I think I have a hardened lump one side of my thyroid, it is asymmetrical and feels firm – dr hasn’t checked this. He has told me no more tests for 2 months

My symptoms are; that for about three years ago after the birth of my second baby at 40 I began chronic migraines. Three years later these are still a problem but accompanied by some tingling and numbness. Periodically I get crushing fatigue, it feels like no blood is going to my head. I sometimes have this awful flulike feeling of being poisoned. I have always been high energy but feel just flat for long periods. My body feels inflamed often (not just my head) and my hands and feet swollen, its periodic. Then I will go a period feeling quite well. I notice that the last two winters I have felt worse, with a good summer in between; strict diet is adhered to.

I haven't seen the Dr much during this period as all they would do is give me more and more painkillers.

My mother had a hypothyroid diagnosis at my age.

Here is my question, my next test is a month away. I have two small kids. I am trying to feel better. I pretty much on a paleo diet anyway, I am about to follow the Terry Whals protocol out of desperation and go even stricter. I mega dose vitamin C and vitamin D and K2 (also started vit D sunbed) I also take some iodine more recently (dodgy area I know), because I feel better within the hour. I also take high vitamin B and selenium, and lots of magnesium and I use bioidentical progesterone cream. Will these give a lift and interfere with my next test? I don’t want to scupper it and then have to wait 6 month, but I have a little family to care for. Please advise I am so scared he wont give me a needed diagnosis and I will be on the backfoot with my health again and I want to enjoy my little family.

[SeaVee79]

Hi Sedgie.

I understand how hard it can be trying to care for young children when you feel so awful. A tsh of 5.5 is higher than it should be for a healthy thyroid and you t4 low in the range. If you have a poorly functioning thyroid then until you start on hormone replacement it is unlikely that all of you other protocols (vit d, iodine, paleo etc) will do anything other than help maybe a little bit with symptoms. They will probably not make you feel well again alone. They are all good things to be doing but if your body isn't producing enough thyroid hormone then you will likely have numerous symptoms and be going in cycles of feeling well and then feeling awful again. It's a rollercoaster which isn't what you need, particularly with young children to keep up with.

Is there anyway you can try another doctor as from what you say it doesn't seem like your doctor is listening? And keep trying until you find someone who will help. Im not sure why he would suggest Hashimotos but then say your symptoms are unrelated. It is highly likely your symptoms are related. Also you have a genetic link as your mother was diagnosed at the same age. Have you tried TELLING your dr you want to try treatment for your thyroid to see if it helps your many symptoms. Sometimes you need to take control instead of just going with what they suggest. Could you also ask for a referral or a scan so someone will look at what is a possible lump on your thyroid?

Is there a reason he has said no more tests for 2 my months? When were your last tests?

Next time you have tests for your thyroid try having them first thing in the morning and fasting for 12 hrs before hand. This way your tsh will be at its highest.

The reason your symptoms seem episodic is because gradually over time your immune system eats away at your thyroid meaning it can do it's job less and less efficiently. Over time it struggles more and more to keep you well.

I'm not sure what to suggest apart from that as you probably need to be started on thyroxine and your dr seems like he just wants to keep you waiting to see if you somehow improve while you continue to feel awful. It's not fair. Like you said, you are getting desperate and thats a hard place to be. At least you've found the lovely community here. They have helped me no end.

Kind regards

Chloe

[Sedgie in reply to SeaVee79]

Thank you Chloe, he is a great dr for getting to the root cause but by the book also, I think he is considering my results are indicative of a problem not sufficient to make me feel unwell. These results two weeks ago were the first indication I may have a problem my previous tests were a year ago, I dont know what they were but must have been within normal ranges.

He also sent me to physio in case the pain and numbness was radial nerve inflammation. Ive seen the physio and she thinks my neck is fine.

Your message was very appreciated and reassuring. I will do the fasting thing. I feel pretty negative and laid low because instinctively I feel something is not right and I am anxious that my results are actually pointing to an explanation, but are not / will not flag things sufficiently for needed medication (but it is sufficiently making me feel under par, I know this)

Yes I felt the dr contradicted himself, but I think it is because my T4 was still in range and some studies say that at this level symptoms are no better or worse for intervention, I would like to find out for myself hah.

It feels mad but I hope for a blip and bad set of results just so I can move forward.

As you say the diet and supplement approach is expensive and requires much dedication for limited result but I have to do something.

I'm just worried that my concerted effort around nutrition and vit supplementation may skew the results...as my B12 and Vit D if tested will likely be good and maybe support my thyroid enough to again be in range as I am not in a dangerous zone (yet?)

[SeaVee79 in reply to Sedgie]

Alot of people on here will tell you that they realise thier tsh needs to be below 2 (preferably 1) to feel well. I'm not sure if that is the same when unmedicated, maybe someone will clarify it for us!?

I know it sounds counter intuitive but you need your results to be the worst they are possibly going to be so that may mean not helping yourself for 4 wks or so before hand. Obviously if you supplement then you may be boosting your levels which won't work in your favour when it comes to getting a doc to help. I had to give up all supps and dietary intervention prior to tests occasionally as I wanted to see my baseline results. Although I understand this is daunting as you don't want to feel any sicker.

You are lucky, you seem to have a good doctor. Especially one who looks for root causes. That is rare. Just bear in mind that it is the experience of most people here that doctors do not have adequate training to enable them to help people with thyroid conditions feel fully well. Those doctors are out there but unfortunately thier training in med school is limited. You seem to have done alot of research already, you may have to continue to be proactive when it comes to the care of your thyroid and always be aware of what your test results are etc.

Slowly over time you will learn where they need to be for you to feel best. I have seen alot of doctors who seem understanding and helpful but ultimately it was only my own research etc that helped me feel better. I'm not doctor bashing. Please don't think that. And if you trust yours to care for you than you are in a very positive place in that regard.

Chloe

[humanbean in reply to SeaVee79]

Alot of people on here will tell you that they realise thier tsh needs to be below 2 (preferably 1) to feel well. I'm not sure if that is the same when unmedicated, maybe someone will clarify it for us!?

Median TSH in healthy women is around 1.3 - 1.7, depending on age.

For healthy men median TSH is around 1.4 - 1.8, depending on age.

See Table 3 in this paper :

eje-online.org/content/143/...

The data from that link was put into a useful graph :

web.archive.org/web/2004060...

[greygoose]

Is that 5.5 TSH the first test you've had? If it comes back at that level - or higher - a second time, you are hypo. You are hypo as soon as your TSH hits 3. But, doctors don't know that.

You really should not be taking iodine without having first had it tested. Iodine stimulates the gland - which is why you feel better straight after taking it. But, stimulating a sick gland is not a good idea, it will just burn itself out quicker. And, yes, it could affect your results. Taking it for a quick fix is going to backfire, and really is not a good idea.

I'm also concerned about you taking B vitamins without being tested. What are you taking? A B complex? How long have you been taking it? The problem is that your B12 test result is now going to be skewed. You won't know what your real level was. You will have to be off it for four months, now, to get a true result. And, the problem with taking it without being tested first is, you will mask a possible low dose that would indicate Pernicious Anemia. Plus, if you don't know your base level, you might not be taking enough. If all your taking is a B complex, there won't be enough B12 in it to treat a true deficiency, anyway. The numb foot sounds like a low B12 symptom.

Vit d should not be taken without testing first, either. You can take too much. And, you need your ferritin and antibodies tested.

[Sedgie]

Oh dear. I was afraid you would say this but I guess it's what I knew. Dump the supplements for now.

At least I can work on my diet. I am seeing the dr next wk about this lump. I've read the NICE guidelines and if subclinical with a hard lump he should refer me. It's not huge but asymmetrical harder this side.

Feel so glum about all this!

[SeaVee79 in reply to Sedgie]

You are at the hardest point Sedgie. It will get easier slowly over time. At the moment you need medication. That will help fingers crossed.

Chloe

[Sedgie]

Thanks for each and every comment. So having just checked I've found out that last march my TSH was 2.98 no T4 taken, and last month it was 5.19 and T4 14.8 so will see what happens next. But I hope I can pull my health up and endure the waiting game without my supplements 😬