thyroid misery

Emme

kev22185 wrote: »

I'm finding it difficult to find a chart of optimal ranges for hypo tests. Lots of contradictory figures online. I know normal ranges can vary depending on the lab but surely optimal ranges remain consistent? Does anyone have a link to optimal ranges?

I am not a doctor so I cannot give you a definite link to "normal" ranges. Some doctors and endos (far and few between ) go by how the patient feels, their heart rate and their temperature more than by their numbers. Here is a link to a website by Dr Mary Shomon, Stop the Thyroid Madness. You may find it interesting and somewhat helpful.

https://www.stopthethyroidmadness.com/

New Home

Regarding the ranges, only this morning I came across this chart - not only does it show the values for thyroid tests, but those for most other things too.
It's quite a big picture, so I won't embed it.

https://upload.wikimedia.org/wikipedia/commons/c/cb/Blood_values_sorted_by_mass_and_molar_concentration.png

wandatowell

Kinda a long story. I had a subtotal thyroidectomy done in 2008. Felt fine since then as I was taking eltroxin on and off. If I felt sh*t I'd start taking it then I'd stop after a while as I'd start finding it hard to sleep and other such thyroid things.

This past year has been very very hard. I'd say I felt really bad till November and since then it'd been even worse. I didn't know what I was feeling but the only way to describe it is sad. Numb, sad, very weak and tired but mostly sad.

Doctor currently has me on 100mg of eltroxim one day and 50mg the next. Also I'm taking lexapro to help with the times I'm feeling sad.

I'm not sure the lexapro is good for me but I'm only taking it two days and GP said to stick with it. It makes me feel anxious. Scared to leave the house or to answer the phone.

I'm not one for blabbing but I'd love to know other people's opinions.

Thanks.

qo2cj1dsne8y4k

You poor thing, I know that numb feeling. Last summer my thyroid was pretty bad and I felt so crap I didn't even realise how crap I felt or how sick I was. I went from 50 --> 100 --> 125 --> 200 where I am right now and although it's taken 7 months treatment of eltroxin I feel normal enough now to realise I'm a bit sad or a bit down, my head isn't as foggy and my feelings aren't as numb. I think the longer I am in eltroxin and the more energy I have, the better everything will get, my mood included.

Trust your doctor for the time being. There's nothing wrong with needing to take the lexapro. If it will help you feel better, where's the harm? I'm sure it'll be all up from here, stick with it and maybe ask for a referral to an endocrinologist

njs030

Wandatowell that's horrible how poor thing. Like Lexi said do trust your doctor and stick with it.
You mentioned stopping and starting eltroxin and that could be why you feel so bad maybe? One thing I found really helped me was switching it to a night time tablet. I don't know how or why it makes a difference but it does and not having to avoid food etc for a while after is lovely!!

Hopefully you'll feel better soon but this is the place to chat anytime.

Wyldwood

Wandatowell, I'll echo what notjustsweet says. I was on a very rocky road with my thyroid for 5 or 6 years after 30 years of stability, and it's only since I switched to taking Eltroxin at night that I've improved. Still not back where I was but a lot better.
I believe it's something to do with better absorption at night and coinciding with the natural rise in TSH in the early hours of the morning.

You need to be fasting for about 2 hours before you take it.

A referral to an endo might be in order if you don't feel better within 6 to 8 weeks

Gene Brodie

Hi All, I have started reading this forum with a view to understanding my condition and find all posts informative My operation was to remove half the thyroid gland only due to the extent of nodular growth on the Thyroid and resulted in a full thyroidectomy.
After the surgery, I complained of the tingling sensation in my face and feet and I was put on infusions of calcium with very frequent blood tests being carried out. It was then discovered a parathyroid gland had been removed and the other three parathyroid glands were “stunned”.
As a result, I have hypothyroidism, hypo-para-thyroidism and hypocalcaemia. The effects include exhaustion and it feels like a constant. I feel like I am constantly in need of a good night’s sleep. Even when I get a good night’s sleep there is no relief as I still feel wrecked. The exhaustion is very difficult to manage and in my view, is not getting any easier. Each time I have blood tests I am informed that thyroid levels are fine, the calcium is often low which may explain the tiredness. I also suffer anxiety which I have been told is a result of the lack of Parathyroid Hormone and the Hypocalcaemia, when it happens it is very difficult to manage. The anxiety seems to just take over and arrives for absolutely no valid reason, making it all the more difficult to comprehend. When it happens, it feels like there is no control over thought as everything goes into a panic and my heart feels like it is going to burst and my stomach is sick and then the tears come and are overwhelming. It feels like what I think a panic attack would feel like. The level of catastrophising would be funny if it wasn’t so awful. I do my level best to try and remember that this is a physiological issue and not a psychological one. Bearing that in mind I try to compartmentalise the emotion attached to the anxiety.
I have a persistent dull headache and brain fog which I have been told is also a side effect of this, it seems like it is always there and I can’t figure out if it is part of the tiredness. realise that I sound like a dreadful moaner. Along with all of the above, weight gain is an issue and lack of exercise due to tiredness doesn’t help… I didn’t realise so many people live with this until I found this forum.
I have taken a long time to finally decide to post here but my endocrinologist doesn’t give me numbers when I get results its either all ok or a bit low…. Should I be asking for number levels…Thanks for all the posts, it does help.

Wyldwood

Gene Brodie, you have my deepest sympathy, the way you're feeling is hell on earth. Yes, you need to see your numbers, ask for a print-out of the blood results and scans and any other tests you have. Make sure the print-out has the ranges on it and see where your results lie within those ranges. Many doctors, both GPs & endos, think that if your results are within the broad 'normal' range you're cured. However, 'normal' is a very different thing for each of us and while I might feel good with a TSH of 3 and a T4 of 12 you might feel like death warmed up.

You need to get to the sweet spot where you can cope and then maintain your condition right there. You can only do that when you know what your optimum numbers are yourself. Don't be fobbed off by the doc telling you that you're grand and within range, you have to fight your corner yourself. Only you know how you feel.

PS you're not a moaner, everyone on this thread knows exactly how you feel.

Amandaalice09

Hi I'm looking for a good doctor to help me combat a worsening thyroid problem. I've heard a dr Margaret griffin in Clane and Bon secours mentioned on different threads and am wondering if anyone has first hand experience with her. Thank you In advance x

jess1984

I am so happy I found this thread! So this is my story and apologies it is a bit long winded. For years I have been utterly miserable. In November 2015 I changed doctors and explained that I was depressed, suffered with crazy pmt etc. She did bloods and advised that my thyroid was a little high. Tests were repeated and again were a ltitle high, on the third test they were normal but she referred me for a thyroid ultrasound. It showed that I had a lot of nodes on my thyroid. I was then referred to an ENT specialist who said the nodes were not of significant size and didn't have to be removed but he wanted to do a nasal biopsy as the nose can be a good indicator of an autoimmune disease. So I had bloods and a chest xray done followed by the biopsy a week later. I'm still waiting on the results but on the day of the biopsy I managed to get a look at my blood test results. My TSH was 0.004 and FT4 was 18.76. Both are out out of the normal range. There was another result "cenvert enz" (I didn't get the correct name of the test I think) that was out of range also.
For nearly 2 years I have experienced night sweats, not every night but at least every week. Some weeks maybe 3 nights but that's a bad week. I don't have a regular menstrual cycle, I can get very bad itch on my legs. I'm always tired, find it hard to lose weight and have lost all interest in life. I felt good mood wise up to Christmas but since then I feel miserable again. I hate living like this. When i get bad bouts im moody at work, I'm paranoid. I feel bitter, jealous etc. I hate being this type of person. I lost my passion for running (used to run a lot of half marathons). I have so much good stuff going on in my life but yet I can't appreciate it. I take thyroid supplement from health shop, also evening primrose oil and b complex. I dabble in tonics and apple cider vinegar too. Am I just a crazy person or is my thyroid driving me nuts??
If you read all of this thank you 😀

Emme

jess1984 wrote: »

I am so happy I found this thread! So this is my story and apologies it is a bit long winded. For years I have been utterly miserable. In November 2015 I changed doctors and explained that I was depressed, suffered with crazy pmt etc. She did bloods and advised that my thyroid was a little high. Tests were repeated and again were a ltitle high, on the third test they were normal but she referred me for a thyroid ultrasound. It showed that I had a lot of nodes on my thyroid. I was then referred to an ENT specialist who said the nodes were not of significant size and didn't have to be removed but he wanted to do a nasal biopsy as the nose can be a good indicator of an autoimmune disease. So I had bloods and a chest xray done followed by the biopsy a week later. I'm still waiting on the results but on the day of the biopsy I managed to get a look at my blood test results. My TSH was 0.004 and FT4 was 18.76. Both are out out of the normal range. There was another result "cenvert enz" (I didn't get the correct name of the test I think) that was out of range also.
For nearly 2 years I have experienced night sweats, not every night but at least every week. Some weeks maybe 3 nights but that's a bad week. I don't have a regular menstrual cycle, I can get very bad itch on my legs. I'm always tired, find it hard to lose weight and have lost all interest in life. I felt good mood wise up to Christmas but since then I feel miserable again. I hate living like this. When i get bad bouts im moody at work, I'm paranoid. I feel bitter, jealous etc. I hate being this type of person. I lost my passion for running (used to run a lot of half marathons). I have so much good stuff going on in my life but yet I can't appreciate it. I take thyroid supplement from health shop, also evening primrose oil and b complex. I dabble in tonics and apple cider vinegar too. Am I just a crazy person or is my thyroid driving me nuts??
If you read all of this thank you 😀

Get your GP to refer you to an endocrinologist. If you are hyperthyroid the health food thyroid supplements may be making it worse. Thyroid problems are complex. If you are hyperthyroid (overactive) you need medication to slow your thyroid down. If you are hypothyroid (underactive) you need thyroid supplements. Hashimotos thyroiditis is a mix of both. Unfortunately the mainstream (including top consultants) think thyroid problems are easy to treat. This is not necessarily the case. Check out Dr Mary Shomon's blog for some useful information on thyroid disorders:
https://stopthethyroidmadness.com

jess1984

Hello...so my doctor called me today, well no she got her secretary to. Apparently everything is normal..My bloods are normal!!!! I have a copy of the results they are out of range but yet they are telling me everything is perfect. What do I do now? I'm really at my wits end. Do I just accep what they tell me or should I ask to see an emchronologist.

njs030

jess1984 wrote: »

Hello...so my doctor called me today, well no she got her secretary to. Apparently everything is normal..My bloods are normal!!!! I have a copy of the results they are out of range but yet they are telling me everything is perfect. What do I do now? I'm really at my wits end. Do I just accep what they tell me or should I ask to see an emchronologist.

Do you want to post the results so people can help you?
Perhaps you should see the doctor and say you feel you need some treatment based on symptoms.

Boronia

Hi,
There's a good Facebook group called Thyroid Ireland withots of information also .Another good place to share results, also some info about possible good endocrinologists.

jess1984

Hello...Thanks for responding. Can I post them here? I didn't think I could.

njs030

I presume so. I think other people have before if you look through the thread. Just don't put up personal info.

jozi

That was me a year ago. I felt rubbish but because my bloods were within range they're was nothing they could do but acknowledge this. Finally after feeling worse again they were out of range and I was prescribed meds.

I think it's a year ago now anyway, I've been meaning to post. I've been on 75 eltroxing for the 4 month now, after an initial dose of 50. Should I get my bloods done again? It's been 4 months now since the last time I had my bloods checked. I feel much better than before, in part, I think, because of the meds but also support from my parents and girlfriend.

Kind of wondering, since this is permanent, are there treatments more natural than eltroxin?

Kurtosis

Jess, posting your results is fine, but just keep in mind that your doctor is best placed to interpret these results in the context of your individual characteristics and normal ranges for the lab that did the testing, people here are not in a position to offer an interpretation.

Mod note

Just a reminder to all posters that seeking or giving medical advice is not permitted. If you're unclear on this, please PM one of the mods.

jess1984

Thanks for all your responses.
Results were TSH 0.004 and FT4 18.76
Have nodes on thyroid which are not of significant size to need treatment.
Suffering from night sweats...irregular menstrual cycle...lack of energy....no motivation...periods of extreme lows and highs....no libido....loss of hair (but it grows back).....shakey some mornings....fainting (not regularly but of late)....

njs030

jess1984 wrote: »

Thanks for all your responses.
Results were TSH 0.004 and FT4 18.76
Have nodes on thyroid which are not of significant size to need treatment.
Suffering from night sweats...irregular menstrual cycle...lack of energy....no motivation...periods of extreme lows and highs....no libido....loss of hair (but it grows back).....shakey some mornings....fainting (not regularly but of late)....

The same as the last time?

jess1984

I have never seen before...twice over a year ago doc said they were showing as overactive but then returned to normal.

dexter_morgan

Emme wrote: »

I am not a doctor so I cannot give you a definite link to "normal" ranges. Some doctors and endos (far and few between ) go by how the patient feels, their heart rate and their temperature more than by their numbers. Here is a link to a website by Dr Mary Shomon, Stop the Thyroid Madness. You may find it interesting and somewhat helpful.

https://www.stopthethyroidmadness.com/

Mary Shomon is not a medical doctor and to the best of my knowledge does not hold the title of Doctor. She has no medical training. Referring to her as Dr may give some a false confidence.

I have hypothyroidism but am lucky enough to have few symptoms at the moment. When I started taking levothyroxine, I noticed an improvement in my symptoms but I was still not as well as I hoped. I started exercising and I believe this was the reason the remaining symptoms improved. So for me, meds, exercise and a good diet seem to work.

njs030

jess1984 wrote: »

I have never seen before...twice over a year ago doc said they were showing as overactive but then returned to normal.

Hi Jess, sorry my mistake I saw your previous post was the same and thought they were two different sets of results.

Perhaps go back and tell the gp how you feel and say you're concerned and ask them to explain their decision.
Though you say on two occasions previously it's returned back to normal levels so perhaps your doctor feels it'll happen again. The only way to know is to ask but do stop taking supplements, a lot of these thyroid health ones are for hypothyroid symptoms which could be making you worse as another poster said.

FlipperThePriest

Wyldwood wrote: »

Wandatowell, I'll echo what notjustsweet says. I was on a very rocky road with my thyroid for 5 or 6 years after 30 years of stability, and it's only since I switched to taking Eltroxin at night that I've improved. Still not back where I was but a lot better.
I believe it's something to do with better absorption at night and coinciding with the natural rise in TSH in the early hours of the morning.

You need to be fasting for about 2 hours before you take it.

A referral to an endo might be in order if you don't feel better within 6 to 8 weeks

Hi there, what prompted you to change to taking your Eltroxin at night? Dr's advice? Research? Or just trying something new?

I've always taken it at night because when I was diagnosed I was working nights at the weekend and evening was the only time of day I could be guaranteed to take it at a regular time.

I saw a new endocrinologist the other day and she questions this. She wants me to shift to morning, I told her I've read into it a little and it seems to be different times of day suit different people... she responded with 'You should listen to your doctor and not Google', which I didn't like although I can see it from her perspective too, I said I wasn't going by Google, but rather going by other peoples' experiences.

I'd be happy enough to stay at evenings as I tried mornings before for 2 or 3 weeks and it wasn't great. She reckons I should persevere for 6 weeks to allow the hormones to settle back down. My levels are a bit out of whack at the moment too.

I have previously been on 200mg Mon, Wed, Fri and 100mg other days, she questions this too and has changed to 150mg daily, which to me makes more sense too.

Any thoughts? Anyone else have any experience of changing times (I have always been underactive if that makes any difference)?

njs030

FlipperThePriest wrote: »

Hi there, what prompted you to change to taking your Eltroxin at night? Dr's advice? Research? Or just trying something new?

I've always taken it at night because when I was diagnosed I was working nights at the weekend and evening was the only time of day I could be guaranteed to take it at a regular time.

I saw a new endocrinologist the other day and she questions this. She wants me to shift to morning, I told her I've read into it a little and it seems to be different times of day suit different people... she responded with 'You should listen to your doctor and not Google', which I didn't like although I can see it from her perspective too, I said I wasn't going by Google, but rather going by other peoples' experiences.

I'd be happy enough to stay at evenings as I tried mornings before for 2 or 3 weeks and it wasn't great. She reckons I should persevere for 6 weeks to allow the hormones to settle back down. My levels are a bit out of whack at the moment too.

I have previously been on 200mg Mon, Wed, Fri and 100mg other days, she questions this too and has changed to 150mg daily, which to me makes more sense too.

Any thoughts? Anyone else have any experience of changing times (I have always been underactive if that makes any difference)?

I read it somewhere but it wasn't google, mentioned it to my gp who is also hypo and she said she take hers at night. The other poster explained it I think but in some people it works a lot better than in the morning.
Also I hated having to wait for my coffee.

Changing to 150 every day bumps you up by 50 a week BTW, did you need to go up?

I would hate having a doctor like that she doesn't seem interested in anything you have to say!

FlipperThePriest

notjustsweet wrote: »

I read it somewhere but it wasn't google, mentioned it to my gp who is also hypo and she said she take hers at night. The other poster explained it I think but in some people it works a lot better than in the morning.
Also I hated having to wait for my coffee.

Cheers. I don't bother with coffee, never agreed with me, tea all the way!

Changing to 150 every day bumps you up by 50 a week BTW, did you need to go up?

What's 50mg among friends when I'm on 1000mg a week... yes she said my levels need to be adjusted, reckoned maybe I'm not getting full absorption because I'm taking in the evening, to which my response was.. then you can't use that as a measurement against previous levels as I've always taken in the evening.

I would hate having a doctor like that she doesn't seem interested in anything you have to say!

Was the Endo, not the Gp, first time I've met her (GP's not much better). My new Endo consultant is a guy called Dr. Firth but it wasn't with him in the end, one of his team.

njs030

FlipperThePriest wrote: »

Cheers. I don't bother with coffee, never agreed with me, tea all the way!



What's 50mg among friends when I'm on 1000mg a week... yes she said my levels need to be adjusted, reckoned maybe I'm not getting full absorption because I'm taking in the evening, to which my response was.. then you can't use that as a measurement against previous levels as I've always taken in the evening.


Was the Endo, not the Gp, first time I've met her (GP's not much better). My new Endo consultant is a guy called Dr. Firth but it wasn't with him in the end, one of his team.

I read an article about taking it at night a few days ago, I'll see can I find it.
It's definitely something to do with giving your body more time to absorb it naturally.
Her argument confuses me a little, I'd think taking it at night gives you maximum time to absorb as there's nothing else in your system.
My gp said it so I was listening to a doctor!!

I'll see can I find that article for you.

I take 125 5days and 100 2 days but I do well when I'm hovering on about 0.2 tsh. Though it's slightly on the hyper end of the scale it's where I feel best and my amazing gp treats on symptoms. Also it meant I lost all my weight in a year thank goodness!

FlipperThePriest

notjustsweet wrote: »

I read an article about taking it at night a few days ago, I'll see can I find it.
It's definitely something to do with giving your body more time to absorb it naturally.
Her argument confuses me a little, I'd think taking it at night gives you maximum time to absorb as there's nothing else in your system.
My gp said it so I was listening to a doctor!!

I'll see can I find that article for you.

I take 125 5days and 100 2 days but I do well when I'm hovering on about 0.2 tsh. Though it's slightly on the hyper end of the scale it's where I feel best and my amazing gp treats on symptoms. Also it meant I lost all my weight in a year thank goodness!

It's obviously still up for debate, last time I read the Eltroxin literature it stated to take in the morning. There is quite a bit in your system at night, you eat your largest meal of the day in the evening closest to bed so even whilst sleeping your digestive system is working quite hard. Having said that, night seems to work best for me, but maybe I've not given the mornings a long enough chance.

Journal of the American Medical Association - Article in favour of night intake.
http://jamanetwork.com/journals/jamainternalmedicine/fullarticle/776486

Wyldwood

FlipperThePriest, it was on the recommendation of my GP that I switched to taking the Eltroxin at night. I had gone very underactive and couldn't tolerate the amount of thyroxine I needed to get to a comfortable level so she suggested trying nighttime dosing without an increase in the actual dose. I have to stop eating at nine and then take the meds at bedtime (usually about 11) with a drink of water. My bloods improved and brought me into normal range, although some symptoms persist.

As I already explained, she said there's a natural rise in TSH that occurs in your body during the night so it makes sense to take the meds to coincide with that.

My endo also said it makes no difference when you take it, or if you take it with or without food as long as you're consistent and always do the same.

FlipperThePriest

Thanks for the replies guys. Makes me wonder why the endo looked at me as if I had two heads when I told her I took them in the evening. Also makes me even more hesitant to change to morning. I probably should be more careful about fasting a while before taking the meds too and then not eating afterwards, because I don't really at the moment.