I know I was on here with a question already but as I think of them I have to ask. I have been told by people in here that at TSH 3.61 that it’s too high which suggests to me that I’m hypo????? Anyways I have 3 symptoms of hypo and 9 of hyper. In fact the only ones are temor and weight loss. Of course I don’t have weight loss. I can’t be that lucky.
My question is has anyone else experienced this?
Thanks in advance.
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If you are diagnosed hypothyroid ie your thyroid is failing, you cannot be hyperthyroid, it's impossible. You can become over medicated but that's different, and if you have hashimoto's you can experience a flaring of that, which results in the damaged thyroid cells dumping their thyroid hormones and elevating levels, but again that is different from being hyperthyroid. It's not helpful and often confusing to label symptoms as either hyper or hypo as there is much crossover in any case, and many symptoms of hypothyroidism in particular, are very general symptoms shared with many conditions. I'd imagine everyone that is hypothyroid has at one time or another experienced some symptoms that might be interpreted more than one way, it's the nature of the condition in that nearly every cell in the body needs thyroid hormone and so a lack of it can affect almost every function..
Thanks MG,
I didn’t think it would be possible so to make it clear, I can never be hyper. I only take 75mcg of Synthroid so not over medicated I wouldn’t think. I have been feeling this way for five years now. Every single day. Not one day of reprieve. Then to ice the cake I had breast cancer and went from crummy to hell after 15 chemo treatments. That isn’t to blame enough because it started way before the cancer. Five years ago my whole body changed and could suddenly not tolerate most meds. That is why I decided to try a NDT in case it was a drug reaction
Thank you.
Women on thyroid hormone are something like 200x more likely to develop breast cancer if inadequately treated. If anything, you are under treated and need an increase. After chemo many things end up imbalanced so start with the basics and work up slowly.
Thanks. That’s interesting. Mine was hormone caused. Oh great. I still have one breast to worry about. Actually, I don’t think about it.
Mine was too, but thyroid is a hormone and they are all interrelated
So you had breast cancer too! How long ago and what kind if you don’t mind me asking. Mine was HER2 positive. Diagnosed two years ago this month.
Diagnosis Aug 2011. ER+. all good now.
Weight gain is more common when hypothyroid, but weightloss is not a rare result
Have you had thyroid antibodies tested?
Or vitamin D, folate, ferritin and B12
About 90% of primary hypothyroidism in western world is due to autoimmune thyroid disease. This is as much a disease of the gut as a result, as the thyroid
Hashimoto's frequently causes poor gut function and low vitamin levels
Poor gut function can cause weightloss, bloating, alternating constipation and diarrhoea
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thyroidpharmacist.com/artic...
scdlifestyle.com/2014/08/th...
drknews.com/changing-your-d...
restartmed.com/hashimotos-g...
healthcentral.com/article/t...
Other gut issues due to being hypothyroid
healthunlocked.com/thyroidu...
But don't be surprised that GP never mention gut, gluten or low vitamins. Hashimoto's gut connection is very poorly understood
Thanks slowdragon
A lot of info here but I’ll try to answer. My brain seems to have left the built along with Elvis lol. ( you won’t get this you are young)
I have had an endoscopy and food allergy testing I live in Canada and we don’t have private testing. I’m planning on going to my GP and asking for the Vit testing you suggested. Also I should get my TPO tested bro I have Hashimoto. I only had it once years ago.
No weight loss here sadly and I have taken 4000 Vit D all winter and also B12?
Thanks again.
MM, Look into "True Health Labs" for private lab tests. They operate in Britain and Europe so I am sure you will be able to use them in Canada. They are on the Internet and I use them every year for my private maintenance check ups. A complete thyroid panel is just under $300 US - you get about 8 tests. They operate out of Georgia (US not Russia!), you pay them and they send your a Purchase Order and a list of local labs (I live in a bit of a remote place so mine are not so local). You can call their doc afterwards for an interpretation of your results - although you can post your results here.
Hi MM,
I checked, yes THLs operates in Canada, they test:
•Free T3
•Free T4
•Reverse T3
•TSH
•Thyroglobulin Antibodies (TGA)
•Thyroid Peroxidase Antibodies (TPO)
Their contact info is :
•support@truehealthlabs.com
•1-888-763-1223
It costs about $300 US (I think that's a bit more in C$.
Hope that helps.
Thank you. I’ll check them out but I can get those tests here for free at least for one year. Just got a standing order. But I do want other tests.
By the way $300 US is $402 Cdn. Big dif. .
I thought it said ~$340 Cdn$. I will recheck.
Yes, the different body systems respond at different rates to thyroid hormone levels, so it is possible to get a mixture of over and under treatment at the same time, especially if there have been recent dose changes. You may find that your response to over and undertreatment is unique, does not necessarily match listed symptoms of over or undertreatment, and varies in it’s presentation slightly each time.
Some symptoms can occur with over or undertreatment. Not a situation that endears us to medics or to medical science!
However I think you are taking a sensible approach, counting the symptoms of over and undertreatment and considering the test results you have. But disregard symptoms that occur with both over and undertreatment as they are less helpful. I don’t usually lose weight if overtreated, But I did once!
However I don’t believe that it is possible to adjust using the test - adjust until you feel well and then see what the test results are. You may find that when you feel well your fT3 and fT4 are always about the same.
I have been in the same dose of 75 mcg for five years now. My TSH remains around 3.5. I was thinking maybe it was a med intolerance which is why I switched yesterday to a an NDT calked Synthroid. A Canadian one. I haven’t had a single day in all that time where I have felt good. I can’t even remember what it feels like. My GP insists that I am in the perfect dose and my numbers are great. I told him last visit that he should think outside the box. He said he does! I can only hope the naturopath will have some answers tomorrow. I have kind of lost faith in her after his though.
Thank you.
Hi mikkymouse
I think it’s to do with the fact from your previous post a few hours ago, you have taken too much NDT, as this is all new to you (NDT) you need to take it very slowly.
You can’t rush it, and don’t take your Levothyroxine with your NDT it’s one or the other until you tweak dosage.
I’ve replied to your previous post with help and guidance, other have also offered advice.
Best wishes & good luck.
Peanut31
Thank you. I was out and just got in so haven’t read other posts yet. Reading them now. I don’t take my Synthroid now as far as I know. Wasn’t told what to do actually. Not happy at all.
The symptoms that I said I had started five years ago. I haven’t had a single day since then of feeling normal. It’s not from today. Today the shaky legs, light head and shaking inside was caused by the tfreeT3 I think. I hope if I go slower it will get better.
Thanks again.
Thanks Fedup. I think it was caused by agitation. I feel that I have been attacked on all sides today and it left me crying and shaky inside. Plus as I said in my original post, tremor was one of the only symptoms that I didn’t have.
It didn’t help that my husband’s planned ten day fishing and camping trip was cancelled after being on the road for an hour because of brake troubles on the truck. He was pulling a 29 foot fifth wheel so to try and get 40 feet of vehicle etc. home was very disturbing as you can well imagine.
Crummy Fathers Day.
So it’s your husband who has it. It’s terrible how it robs people of their lives. I haven’t had one for five years and of course my husband as my caregiver doesn’t have much of one either. I don’t know what Graves is. Does he have that or ????
I just pray that one day I will wake up feeling better.
Adrenal insufficiency is probably what is occurring as it happens to me during or actually just after a stressful event. If you are taking vitamin d and b12 that is all well and good but you also need the cofactor of Magnesium which works at the cellular level with both of them to prevent you from feeling agitated and stressed. Magnesium also helps make the enzyme that breaks down histamine. Too much histamine can make us react to lots of foods. Read the 'Magnesium Miracle' about the benefits of Magnesium. An Epsom Salts bath is a good start.
Thank you. I forgot to mention that I take Magnesium too. I plan on going to my GP and asking for an adrenal test. Also a cortisol one if they exist. I will pay if I have to.
We don’t have a bath tub lol. Ripped it out and made a huge walk-in shower. We never took baths and the grandkids now take showers only too. Being in our 70’s now the shower made more sense.
Not sure if they do it in Canada but after a shower Better You Magnesium lotion is really good as an alternative to bath salts.
Thanks. I do take a supplement though. I’m going to have it tested.
Serum Magnesium tests won't show a cellular deficiency, only a RBC test will do that which I recommend. Some supplements (especially Magnesium Oxide) can often get poorly absorbed with hypothyroidism. I was taking a useless Magnesium/Calcium combination at one time and they did nothing for my deficiency. As Magnesium deficiency feels a bit like hyperthyroidism ( insomnia, anxiety, palpitations, painful joints, bone loss, and weak muscles) it is easy to mistake hypo for hyper. When people on the forum say their hypothyroidism feels like hyper, then it occurs to me that they may be Magnesium deficient (from my own experience).
Thanks. That’s an interesting point to think about. I think I had it taken in a fairly recent blood test so I’ll go and look and see. If I find it I’ll get back to you. I have four of those symptoms.
Yes, I have never had the symptoms to match the diagnosis, and symptoms I had were dismissed. When I had very high hyper blood levels I did not have 'lose weight' symptom (unfortunately!). Despite not having the symptoms the consultant wanted me to take Carbimozole to deal with the symptoms! Madness. They even told me it would 'wipe out my immune system'. So, I said 'so I be more likely to have cancer rather than thyroid issues?' I took great supplements and 6 weeks later the blood levels were normal.
Thanks sedum
I’m so upset here. Don’t where to turn. You probably feel or have felt the same. It makes me feel a bit better to know that someone else didn’t have the symptoms to match the diagnosis.
Are you ok now? I want to hear of some nice endings.
The aim of a treated hypo patiant is TSH of 1 or under and free t4 and free t3 St least half way through range, some need above 3/4 way through range. You are under medicated and increases of 25 Levo after blood tests every 6 weeks until your levels meet that, and /or you feel well is what should have, and should happen. Should say 25mcg Levo above but for some reason I can't edit??
You just never seem to have been treated correctly?? No wonder you have felt so ill for so long.
Thanks for replying I have been looking over my lab results for the last five years and I realize that it doesn’t seem to matter what dose I take. It fluctuates all over the place. For example on 125 I went as low as .86 and at 112 it was 4.51. I have wild swings. Not sure what that means though.
mikkymouse
You said you have Hashimotos. During attacks you can feel hypo one day & hyper the next as stored amounts of hormone is dumped into the blood stream making you feel very unwell. It can make your lab results extremely variable during periods when transient hyperthyroid symptoms are felt.
Medicating adequate thyroid hormone helps to suppress Hashi attacks but NDT can be intolerant of elevated thyroid antibodies unless TSH is kept suppressed.
Thank you. So the thing is my GP won’t increase my Synthroid beyond 88 and I had to beg him to do that. I never filled it for certain reasons and so I stayed in 75.
Now the naturopath has given me an 8 week supply of 1/2 grain. I don’t think is going to work. Do you?
Does this mean I can never feel better?
NO ! ! ! ..... , of course not mikkymouse.
Recovery should be available to all but it is about finding a sensible path to achieve it. And switching meds should be approached with caution or you could end up even more ill.
You don't even have enough NDT to medicate a full dose for the eight weeks and if you allow your TSH to raise even more, the NDT can encourage further Hashi attacks as your antibodies see it as similar to your thyroid gland. You will also be further under medicated.
Many who are very ill are likely to have adrenal issues and inadequate cortisol levels. Sufficient cortisol is required when we medicate NDT, otherwise some people find it difficult to raise their dose to an amount they require to find their well-being.
I still think it could be possible your symptoms are due to years of being under medicated. If I were you I would knock the NDT on the head for now and look at buying and adding a little bit of T3 that will encourage your Levo to work so much better. You will still have the adrenal & elevated thyroid antibody problem with the T3 but because it is a separate pill you can introduce it slowly, only raising when your body has accepted that dose and no side effects are felt, whilst you are working on the other issues.
Seek advice re sups to reduce thyroid antibodies, to support possible failing adrenals, and ensure gut health and nutrients are optimal.
Many of us have to self medicate & use private labs to achieve well-being.
But what do you do when your GP won’t give it to you? That is where the problem lies. I simply don’t know where to turn. I can ask my naturopath for just T3 and see what she says. As for the tests, I’m going soon. Thank you for all of this. It makes a lot of sense to me.
When we become desperate enough, we buy it ourselves from shared sources on the internet, and self medicate. We achieve our well-being not through doctors and health care systems but by self education and the support of this forum.
That is why the forum has such a wonderful community feel. 🤗
.
For more insight you should read "The Root Cause" by Izabella Wentz. thyroidpharmacist.com/book/
Mine was 4.96 (high) and I couldn't keep weight on. I went down to 76lbs! After being on levothyroxine for 2 weeks, I've been able to finally get up to 107-110.
I may be able to stop eating 5,000-6,000cal/day and every 2hrs. I had to wake up twice a night and eat.
I had tremors, weird contortions, and still have a horrid BP rollercoaster & angina. They found out I'm massively potassium/magnesium deficient and supplements have helped.
Losing weight fast or continuously can lead to malnutrition. Make sure they check your nutrient levels.
My Dr said the weight loss was normal for those with a genetic glitch. *HUGS* Hope this helps. You're not alone.
What a sad sad story. No wonder you are fed up.
What is a thyroid storm?
I got my Hashimotos from my mom. thanks Mom.
I don’t know exactly what Graves is but didn’t know you could have two things at the same time.
Could that be why my numbers go all over the place. High even on a high dose eg 4.51 on 112 mcg of Synthroid.
Or then lower on a higher dose. I just looked back on my numbers going back five years and didn’t realize how crazy they were at times.
I am turning 71 next month and still hopefully having a few years left. Want them to be good. After all, these are the Golden Years NOT!
Encouraging to hear that the NDT helped.
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Has anyone had palpitations with a high TSH level? 
Has anyone had this? Desperate for answers 
advise on what I should do about symptoms?
Does DHEA balance your hormones? Have you used DHEA? Has anyone had a NHS test for DHEA levels?
