Please help - test results, feel extremely unwe... - Thyroid UK

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Please help - test results, feel extremely unwell.

Hi everyone,

I posted a while back and got some great help but life got in the way and I haven't been back on here. I never forgot the wonderful advice though and I finally saved enough to get a full thyroid panel plus reverse t3 privately.

Quick recap, raised tsh for around 1.5 years, fluctuating on each blood test but I think that's because I didn't know not to do it in the afternoon. Gp acknowledged was slightly raised but refused a trial and blamed that I had my son about a year previously, he is now 2.5 and I am getting more and more unwell, I have no quality of life and I'm desperate now.

I can't lose weight, I've gained, I'm hungry, can't sleep, depressed; hair texture changes and loss especially my eyebrows. horaseness and dry/sore throat, urination issues, constipation, no libido, terrible aches and pains, extreme anger/irritability, extreme fatigue and post exertional malaise, headaches/jaw ache/eye ache, grey hair increasing.

Please can someone help me interpret my results and suggest what it looks like is up taking into consideration the above symptoms and way this has come about. Thank you in advance. I also have pots and eds type 3

Thank you x

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So your tsh is above 5 so your thyroid is struggling very hard, and your free t4 is low in the range but your free t3 is fairly high in the range. And you haven't got Hashis. And you are not on any thyroid meds? And your b12 is way too low. The ferritin is ok.

Much cleverer people than me will comment on the reverse t3. I'm just musing aloud because no one clever has answered you yet.

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Hi,

Thank you for responding I really don't get what is going on I've had elevated tsh for 1.5 years now and gp refuses to treat me I'm on no mess for it. I feel so ill. I just don't know what to do.

That's really interesting what you said I've focused so hard on the tsh I don't really understand all the rest except vitamin d as I've suffered with low vit d for years I'm actually on calcium and bit d prescribed yet it's still low. Just am at the end of my tether.

I had another b12 test done. One was active one was non active. I'll add that to my post.

Thanks so much x

Won't let me add a screenshot but my active b12 was 101 range pmol/L 25.1 -165.

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Why are you on calcium? Have you had it tested? Even if yours is low, calcium suppléments are not a good thing to take. Is that what your doctor prescribed for you? They know nothing!

You should be taking quite a high dose of Vit D3, with no calcium, because vit D3 increases the absorption of calcium from food. You should, therefore, be taking vit K2 with the D3, to make sure the calcium goes into the bones and teeth, and not the tissues.

As for your thyroid hormones, your TSH says you're hypo. But the FT3 is quite good because the high TSH is driving the conversion. At least you are converting well. But, that situation cannot last forever, and you should, at some point, start thyroid hormone replacement. If your TSH is contunually high, then ask your doctor for a trial of Levo. Insist on your symptoms - although I doubt he knows what the symptoms are - but you have to be persistant. Or see another doctor, perhaps.

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Hi thank you for the reply.

I have had varying levels about range for over a year and a half now. I have other conditions aswell, pots, eds and endometriosis. Is it possible these conditions and chronic stress ie my dad has had cancer, housing issues etc so quite severe stress. My gp has prescribed 100 mcgs of Levo based on these latest results.

Is this what a failing thyroid does, flounder being mildly high for a period then suddenly completely fail? I'm so scared of the thyroxine and what it will do to me and if after the trial my thyroid doesn't recover then I will have to take it and I've effectively caused that. On the flip side I'm just so I'll with no quality of life. I just don't know what to do .

My gp tested my calcium and phosphate some years ago, it was low, I don't think I've had it tested recently,but even after it was ok the only ones she could prescribe was vitamin d and calcium called Adcal d3, so then I was still low do when she was allowed to she prescribed fultium.

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Yes, well, it's better to buy your own suppléments, because doctors only prescribe the cheapest, nastiest ones. But you should get your calcium rechecked rapildly, because it's not something you want to over-dose on!

I Don't know what your doctor has been telling you about thyroxine, but either she, or you, have got it all wrong. It's not the fact of taking the thyroxine that means you have to take it for life. You have to take if for life because thyroids Don't get better, and you need thyroid hormone to live.

Thyroxine doesn't do anything to your thyroid. It doesn't go anywhere near your thyroid. It goes into your stomach, then the intestines where it is absorbed into the blood, and is then taken to all the body cells that need it. If you stop taking it, your thyroid gland just carries on where it left off. And, if you were ill before starting taking it, then you will be ill again when you stop.

BUT if you take it when you Don't need it, it will make you ill. It will make you hyper, which some say is worse than being hypo! So, you will stop taking it, no harm done. There is absolutely nothing to be afraid of.

I Don't know if I explained that clearly, but I must insist on the fact that you will not be doing anything to your gland by taking thyroxine, and if you do not need it, you will not have to take it for life. And if your doctor told you otherwise, then she's either a liar or very ignorant! Just take it and see how you feel.

'Is this what a failing thyroid does, flounder being mildly high for a period then suddenly completely fail?'

That sounds like Hashi's, to me. That's what happens when you have Hashi's. I know your antibodies are negative, but you cannot rule out Hashi's on one negative result, because antibodies fluctuate. Plus, I've heard tell, some people with Hashi's never have high levels of antibodies. I imagine they find out they've got it from a scan, but it never shows in the blood. So, we cannot completely rule it out.

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Hi

Thank you for your reassurance. I felt so confused and scared of taking it. When this started happening over a year ago she put me off having a trial of Levo as she said that once you start taking Levo the thyroid gets used to the extra hormone and if it's stopped 9/10 the thyroid completely fails due to the missing hormone it got accustomed to. So that really scared me off as I didn't have and still don't have really obvious hypo.

She's very unaware about thyroid problems and thinks really my other illnesses ie pots and eds are causing this she thinks I've got non thyroiduk illness causing it. Could that be the case and I'm doing more harm than good by takin Levo. Sorry for all the questions but I just want to understand it better so I feel more confident going ahead with the trial.

I will get my calcium checked ASAP. What can it do to you?

Thank you.

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Well, you said it yourself. She put you off. For some unknown reason, they just do not like prescribing thyroid hormone replacement, and invent all these scare stories to put you off.

You will not be doing any harm by trialing Levo. My personal story : I'd been taking THR for about 18 years, when - for reasons I won't go into - I stopped taking my T3, and everything else, for six months. My thyroid, which I thought was dead, due to Hashi's, kept me alive during that time by coming back to life and producing enough T4 to keep me alive - and quite well, actually. At the end of 6 months, I went back onto T3 only because I was putting on weight. So, I had not harmed my thyroid at all by taking THR for 18 years, and neither will you by trialing Levo. :)

Excess calcium can collect in the tissues, like the heart and the kidneys, and cause problems.

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You need to supplement B12 and vitamin D.

Both will be contributing to you feeling dreadful and being in pain.

B12 you are going to have to buy yourself as as far as the NHS is concerned you are in range. Get a sublingual brand like Jarrow or Solgar. While B12 is water soluble some of it's stored in the liver, and you need a high enough amount for this.

With vitamin D you can see if your GP will prescribe supplements. In some areas they do while others they don't. Ideally you want to take 5,000IU with vitamin K2. (You need to buy the vitamin k2 yourself) Lots of GPs still tell you to take 2,000 IU if you are insufficient however you want to get your level up as quickly as possible to around 100 hence the advice is to take more even though vitamin D rises slowly. Then get tested again at around 4-5 months. (Use City Assays as the NHS in most areas doesn't like to test those who are insufficient ever again.)

Can you see another GP at your practice for the vitamin D and thyroid problems? It doesn't need to be a female GP just one that listens to patients.

If the new GP stone walls you as well you need to change practices as your hormones should have gone back to normal by now due to the age of your son. Unfortunately how to change practices and which practices in your area to change to will require you to do some research, as while some people can do it easily in other areas you have to complain about your GP.

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Thank you so much for your advice.

Can I get the b12 you suggest at places like holland and Barrett? My gp is usually great at certain things but this she's appaling, truly. I am taking utrogestan which is natural progesterone supplement as mine is so low and I am still breastfeeding my son. She blames everything on breastfeeding and I feel so annoyed.

Do you think I should be on thyroid meds? Do my duration and levels warrant it by now? I know how I feel does. :(

Should I try and get checked out for osteomalacia? As I'm wondering if the terrible pain could be that as I've been deficient for years but have been on supplements and insufficient for years. She put me on 12 weeks high dose when I went deficient a few months ago but it's back down again.

Thank you x

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The NHS test for osteomalacia depends on your age and family history. If you are young with no family history they will just test your calcium and phosphatase levels.

In regards to vitamins b12 and D if you are once deficient you need to supplement for life unless something drastically changes.

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Hello,

Thank you for your reply. I'm sorry with lateness I find the layout on here hard to keep up with replies. Yes she's gone ahead and upped my d3 dose but after all I've been told here sounds like I need a better quality one anyway.

She even said that I could do with a sublingual b12 but she can't give me that. So thank you for making me aware, I will buy my own. Is it possible the low vitamins caused the thyroid symptoms or is that the other way round?

Thank you

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The nhs is limited in what it can prescribe on vitamins. Top up your d with some d3 from a chemist. Good quality chemists and Planet Organic sell Solgar for the methylcobalamin.

Is your son taking some D3? If you have been low in it while breastfeeding, he may be low too. In this weather consider short exposures to the sun with very little on but wearing sunglasses, between 12 and 3, making sure he does not burn. The sun will deal with any shortage for you! ie, consider not slathering with suncream and shielding with hats straight away.

Had you been supplementin b12 before the active b12 test?

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Hi,

He's not no, he keeps saying his knees hurt and unfortunately he's extremely bendy.do you have any recommendations on a good one for him please?

Thank you

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I think any D3 is fine. They do orange flavoured drops he might like. Mine were v double jointed too .. Don't overdose. You could ask for a D3 blood test for him given your low D and his complaints. Sun would be best... there may be other good things in sunshine they haven't found yet.

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I recently started taking a liquid supplement by Live Wise Naturals that contains D3 and K2.

It is non GMO and a single drop contains 1,208 IU of D3 and 25 mcg of MK-7. Each bottle contains 1,000 drops.

It has a strong mint flavor (think Altoid) so it's like having an after dinner mint!

I like that I easily control the amount I'm taking - more on some days, less on others - and the liquid form is readily absorbed.

I bought it on Amazon but I imagine there are many sources.

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Hi there,

Thank you that's really good idea. I know I've struggled so much getting my levels beyond 50 since these thyroid changes. Years ago I did manage getting it to 80 and the pain was better. I'm a bit angry as this last year she's just plied me max dose dihydracodeibe for debilitating pain and perhaps that wasn't a good idea :(

Is that liquid ok for 2.5 year olds do you think? And dose anyone know his dose for a 12/13 kg child.

Thank you

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I don't think a child would like the strong mint flavor of this particular drop. There are others out there (Google liquid D3 with K2) that may have a flavor that would appeal to a child.

Your pediatrician should be able to answer the dosage question. What's nice about Vit D is that you can take a large dose say once a week - I even know a woman who takes 50,000 IUs once a month - instead of daily.

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Hi thank you for your post. Is the e book one you wrote?

I'm confused as my gp has given me 100mcgs of levothyroxine and I don't know whether to take it or not!

I feel so rotten and I have no quality of life. My mother had a large footer and a large part of thyroid removed, I don't know how this worked but she was hypothyroid with that. My grandmother was severely hypothyroid and I think her mother had graves.

I have 3 sisters and we all suffer issues like you mention to varying degrees, my grandmother was very unwell with lots of ailments. My mum is chronically fatigued as am I.

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Hi ,

Thank you so much for your reply. She told me if it doesn't work that she will take me off the Levo.

This worries me as if that happens then my thyroid may fail entirely, she told me that's why she really is cautious of trials.

Is t3 something a gp could prescribe?

I know this sounds vain but it isn't well not totally, but I'm extremely worried that starting thyroxine and perhaps if I have to stop it will affect my hair further. It is down to the base of my back and has always been my best feature, the texture and strength has been affected and I notice a mild amount of shedding and fullness. I'm so scared of thyroxine causing the thyroid baldness. Will this happen and especially if I stop Levo?

Also I saw some about a diog gene? Is that what you mean about hereditary? Should I have that test?

Thank you for your advice and I will get the book

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It's not the t4 that causes hair loss, its the thyroid deficiency.

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Just to add that they tend to start at 25 if you are older, 60 or above, but 50 if you are below that. Personally I was grateful for the slow climb, though I had to take it higher than the gp would to feel better.

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I'm reading this from my iPad and though it's a clear image I have struggled to read the figures cos they are soooo small. So struggling to read your results to be honest.

However from what I can make out and others that have stated the actual tests results your thyroid sounds very similar to mine when it was failing. That is TSH went up FT4 slowly went down. I felt dreadful with similar readings to yours and in a lot of pain too. Is this the first blood test that your TSH has gone over range? Generally GPs tend to not prescribe until they have have several consecutive blood test results showing the TSH above range. Make sure you keep copies of all your blood test results, which should be repeated at three months intervals -you need to do this because if you are showing an overall trend of TSH going up and ft4 falling then that can also be used to diagnose hypothyroidism. Whilst your ft4 is in range it's right near the bottom of the range and may not be what was the norm for you when you were well. It shows that your thyroid is struggling to produce enough T4 and your reserves are running low.

Secondly low B12 is common in untreated or under treated hypothyroidism.

Make sure your GP has checked you for absorption issues.....am trying to remember the tests but if you look on the B12Deficiency website they have them listed. It's very important this is checked before supplementing as its possible to have something called Pernicious Anemia. Supplementing skews the results. If you do supplement then as well as the B12 also take a compound B12 supplement with folate in it. This is because all the vitamin B's work together -you should not take B12 on its own.

Lastly I'm also someone who suffers with low vit D -mine is due to a skin condition that means I can't tolerate any sun. So all my vit D is through supplements. You need to get yours up in the 80's. GPs will only prescribe low doses of vit D3 so am guessing your dose is probably only 800iu. Look at these websites: The Vitamin D Council or Grassrooots. They have excellant information about vitamin D. I take 5000iu per day with K2. K2 makes sure the calcium I absorb that is triggered by the vit D supplement goes to my bones and not elsewhere in my body. Vitamin D is best absorbed in an oil. NHS usually prescribes in a tablet non oil form unless your under a bone specialist.....lol. Frankly it's cheap to buy in the correct form and much more effective.

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Hi everyone thank you so much for your responses. This is not the first time at all. It has been raised like this for over a year and a half now, fluctuating but not wildly and mainly due to me being unaware of time of day I should get the test.

At first it was blamed on the fact I had my child in the year leading up to tsh increasing. It was repeated every 3 months with not much change but I think high dose vit d the gp prescribed helped slightly.

Reverse t3 ratio is slightly low tsh slightly raised and vitamin d low for those struggling to see picture.

I am so great flu for everyone's help but I'm really confused, some are saying I am hypothyroid and I saw one that says no maybe something else? I have extremely foggy thoughts and I'm not processing all the info well. I really don't know wat to do :(

My gp has prescribed me 100mcg of levothyroxine as a 10 week trial. Please help it seems far too much

I just don't know what to do now, I feel so ill and it's such a breakthrough to even get the Levi just don't know if by taking it I will be setting myself up for a whole host of issues :(

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