I Really Don’t Know What to Do Please Can Someo... - Thyroid UK

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I Really Don’t Know What to Do Please Can Someone Advise on my Situation I Keep Going Sweaty and Clammy Like I’m Going to Pass out !!!

Kazbe
Kazbe

I feel really awful I asked advice last week and was very kindly given advised to up my NDT to 1 3/4 grains which I have I’m so under-medicated!

I know my body needs more but it doesn’t like the increase !! I feel sweaty clammy tired faint my temp low 36.3-36.4 my heart rate the same 80bpm

I was 1/2 Grain in March then increase by 1/4 until recently on 1 1/2 grains so that’s 4 months I should of really been on more at least 2 grains by now ! But looking at my results I don’t know if I’m absorbing the medication it’s doesn’t seem so these results shocked me

Nature Throid results came back really awful they are worse now than before I started NDT these below are on NT for 4 months

TSH 4.4 (0.27-4.20)

Free Thyroxine 9.8 (12-22)

FT3 4.4 (3.10-6.6)

Thyroxine In Feb on 50/75mcg

TSH 5.75 (0.3-5.5)

FT4 14.7 (12-22)

FT3 4.5 (3.1-6.8)

TPO 450 (34)

TG 250 (115)

I don’t know what to do as I’m self medicating, my mums really worried and wants me to go back on thyroxine so the GP can monitor me but they gave me palps bad and I was so cold !

I’m torn between trying to up my NT to raise my levels so I feel better , but is my Hashimotos stopping absorption? Going back on Thyroxine to get my T4 stored up again and trying to cope with palps ?

I’m sat here in tears I’m so fed up of feeling ill and I’m out of my depth I don’t know what to do for the best .

Any Advice on my next step would be very much appreciated.

Kazbe

29 Replies
oldestnewest

I’m no expert on here but I do also have Hashimotos. I also have coeliac and the sweaty clammy feeling is how I felt every time I ate wheat . See if you can be tested for this . I’m 9 months on a gluten free diet and slowly introduced vitamins, minerals into my diet once my gut had healed . I assume I wasn’t absorbing my thyroxine or iron meds I was on I was really ill. BUT thanks to the helpful information given on here I feel so much better not 100% yet but I am able to enjoy life now. This site saved me ...

Kazbe
Kazbe in reply to Clare1971

Hi Clare1971

Thankyou for your kind reply I’m so glad you are feeling much better :) yes this site is amazing the people have been a lifeline for me too!

I have been tested for celiac and my results came back negative ! I am gluten free too but my Antibodies are TPO they have decreased by TG have increased I’ve not a clue what that means !

I know if I accidentally eat gluten I get stomach cramps and feel awful :(

I’m going to see what tomorow brings hopefully il get some more advice on here and try and get my medication sorted it’s just such a long road , I thought after a year I would be feeling much better !

Look after yourself and stay well

Kazbe

I read your question and replies a few weeks ago. I have been taking levothyroxin only for 12 years, had no problems with Mercury Pharma, but did with Teva. Have you ever tried different brands of levothyroxin? You never got your levothyroxin dose high enough to treat the hypothyroid symptoms , your TSH should have been 1 or under. Since I had poor T4 to T3 conversion, I added 25 mcg T3 recently. Despite doing this very gradually with 1/8 th pill additions at a time over 5 weeks. .. my Bp can still be high, pulse sometimes goes over 100, basal ( mercury thermometer in mouth) temperature still no more than 35.8C. But my ability to walk is so much better, and I feel more human. I am assuming my body, so long without much T3, will take sometime to settle down. You don't seem to be a poor converter, ie need T3; I found it very powerful compared to levothyroxin; perhaps you should try other levothyroxines and get your doctor to keep testing bloods/ palpitations etc ( unless in fact you need T3 and no T4 like some in this forum)

Kazbe
Kazbe in reply to Judithdalston

Thanks for the reply Judithdalston

I thought everyone had gone to bed !

I hear what you are saying regarding never getting my thyroxine up high enough, your right but every time I increased my palpitations got bad and the Endo put me in beta blockers which affect absorption and I didn’t want to take heart tablets I thought my body is saying stop the thyroxine so I did .

I wondered if my body doesn’t like the T3 in the NDT because the dose was equivalent to 75mcg T4 and 18 T3 and I’m under medicated!

I was on Mercury Pharma too this was better than any other my T4 levels were rising and T3 was 4.5 but like you say it’s being undermedicated any what the body will tolerate :(

Thankyou for thoughtful advice it’s very appreciated.

Take care

Kazbe

Judithdalston
Judithdalston in reply to Kazbe

One of my symptoms .... still awake at 2 pm plus! Beta blockers also slow down metabolism...Dr Lowe( look at his online archives thru Thyroid Uk) thought they stopped hypos ever feeling better. He also had a few patients who did need heart meds to take enough Thyroid meds.

shaws
shawsAdministrator

Blood tests don't inform how the patient is feeling unfortunately.

When we self-medicate we begin on a dose approx to what we took on levo and every 2 weeks increase by 1/4 tablet until symptoms are relieved. I shall give you some links . Also important are all vitamins/minerals which should be optimal.

web.archive.org/web/2010112...

web.archive.org/web/2010103...

nebula.wsimg.com/b822d36efe...

Kazbe
Kazbe in reply to shaws

Thankyou Shaw’s

I’ve read through this information and it’s very informative and useful I will start a diary and use a graph for my symptoms that way I can look and see how things change each week .

I’m going to see a naturopath to see if I can heal my stomach I think it might be the Hashimotos that’s causing my problem .

Hopefully il start to improve soon

Kazbe

shaws
shawsAdministrator in reply to Kazbe

It can be very, very stressful for us when not responding to levothyroxine and get no help from doctors. We now realise their knowledge is zero (most of them) .

Re your stomach. Are you aware that if hypothyroid we can have 'low acid' rather than high but symptoms are nearly identical. Some doctors will prescribe antacids but that's not what we should be having.

Low acid means we don't have sufficient acid in our stomachs to dissolve food etc. I myself take Betaine with pepsin tablets with meals especially with protein (i.e. chiicken, meat etc) . I don't need it for breakfast,

scdlifestyle.com/2012/03/3-...

shaws
shawsAdministrator

Blood test results when we take anything but levothyroxine, cannot correlate as levo is T4 only. It only converts to T3. If we take NDT it contains, T4, T3, T2, T1 and calcitonin which has been in use in various forms since 1892.

The links I gave above are by an Adviser to TUK who died. He only took a blood test for the initital appointment and thereafter it was all about how patient improved.

hormonerestoration.com/Docs...

Kazbe how are your adrenals sweetheart? It’s been for me one year and my tsh has been lowest 5.2 so u r not alone I do struggle with many other issues plus Hashimotos etc .its a big nightmare for myself.Maybe u real sky need to address adrenals are you on any adrenal supplement at the minute because this is how I felt I couldn’t even up the dose of any medication it made me worse palpitations hot feeling feeling like fainting all the time .once I have started Adrenal support I feel better .i was our on Adrenavive II and last week beeing on 1 capsule ( I started very low 1/4 capsule every 7-10 days) and was on 1/4 and 1/4 ndt and bloods showed tsh 5.2 On such a low dose already so last week I suffered from high temp which was 37.2 and I felt very weird and no power at all I felt like something was way too much for my body .de P told me to stop ndt ( another set back for me :-( ) and contribute with Adrenavive II only 1/4 capsule for now till next Monday.I have so many set backs Kazbe I don’t feel ok too for a looooong time now I have lost so many things-job social life I have no friends Iam on my own I struggle to go to the shop etc .what I can suggest you to do is to fight and never give up.i can’t give u any other advice as iam not medically trained.Have u checked all ur vitamin status? Are they alright ?

Ziggy2007
Ziggy2007 in reply to Ari3

I am so sorry you feel so bad ,the doctor withdrew my levothyrixine yesterday on advice from the endocrinologist I was waiting to see ,he never even saw me ...

I am struggling to know what to do next .

like you I have lost so much ,I am sending you and all others who are suffering my warmest wishes ,I try to achieve one thing every day ,it makes a difference ,xx

Kazbe
Kazbe in reply to Ziggy2007

Thankyou for your very kind response, the people on this site are so kind and helpful :)

I’m sorry to hear you are struggling , that’s awful if you need the medication someone on here will offer you their expert advice soon .

I hope you get things sorted and start to feel better .

Take Care

Kazbe x

Kazbe
Kazbe in reply to Ari3

Thankyou Ari3

I have read through your response i too have lost my job many friends don’t have a social life and feel like I’m in a dark place where things are spiralling downwards and I’m finding it difficult to get back up again !

I have been to see Dr P he recommended Adrenavive and Metavive which I took then I was suffering from high Cortisol and was advised to stop the Adrenavive as this raises the Cortisol its more for people with low Cortisol (Addison’s ) I continued with the Metavive but it wasn’t strong enough my TSH was 10.6 my T4 was 11 so I went back on Thyroxine 50mcg but that wasn’t sufficient so the Endo raised this and I started again with palpitations (1 step forward 3 steps back )

My journey sounds very much like yours and I’m taking your advice and going to see a naturopathic dr so he can look at Hashimotos also Adrenals and my Diet to see if I can heal my stomach and then who knows I may be able to get on medication and stabilise 😀

You take care and il keep you posted I live in Derbyshire and I don’t know of a support group local to me I think the nearest is Solihull but I really think I’d benefit from meeting others in the same situation we could support each other !

Speak Soon

Kazbe x

Ari3
Ari3 in reply to Kazbe

I live in Burton On Trent by the way :-) there is a group meeting on 7th July if u interested ? Just thinking how could you go there ...which area exactly u r living maybe we could give u a lift Iam thinking .dont think u r on your own alright ! Please please remember that there will be a way out of this for u and me one day .i do cry many times thinking I will never be able to live normal life but deep in heart I hope that I will be fine and will find my way as everyone else did and are looking.naturopath and nutritionist is essential part of recovery from Hashimotos if u really want to get better in a long run! Please feel free to text me or if u want we can stop numbers !

Ari3
Ari3 in reply to Kazbe

Yes nearest is solihul I been there once !

Kazbe,

Could this be low blood sugar? I had the same thing when I was first taking levo. Do you also get shaky and faint?

Please see your doctor, your symptoms can be be thyroid related but many other illnesses manifest in this way.

If Hashimoto’s is the cause, then there’s more to do than taking tablets. Thyroid medications do not treat Hashimoto’s, you need to make a few changes in your diet to try to get it under control. You have inflammation in your body and you need to try and calm that down. If you can, try and eliminate as much sugar from your diet as possible. As others have mentioned, often gluten sensitivity is an issue, it won’t harm you to leave it out for a while to see if that‘s your issue. If you can convince your doctor, get him/her to check your adrenal function.

Remember to make your appointment to have blood withdrawn as early as possible and don’t take your thyroid meds until after blood has been drawn.

I hope you feel better soon.

Kazbe
Kazbe in reply to mauschen

Thankyou Mauschen

I have decided to go and see a naturopathic doctor as my GP just goes by your TSH they have got no idea she said my TSH at 10 was borderline !

This is the battle I’m struggling with which is why I’m self medicating, but somethings not right My NDT doesn’t seem to be working so I need some investigations into Hashimotos and adrenals to see if that’s the cause !

Thanks Again Take Care

Kazbe

mauschen
mauschen in reply to Kazbe

Sounds like a plan, please let me know how you get on.

Good luck

Hi Kazbe , l am new to NDT too and have found as l slowly increased my indicators were increased heart rate and jittery , l found ,as l am finally up to 2 grains ,taking all at once increased palpatations and was unpleasant so l have begun to split the grains x3 over the day 1 grain 6 am ,the 1/2 : 12.30 and around half : 4 ish and my bodys response is much better and the increased heart rate has reduced to between 60 and 68 . Hope this helps x

Kazbe
Kazbe in reply to Cariad123

Hi Cariad123

Thankyou for your response that is a good idea to split doses to see if it makes a difference :) I have decided to make an appointment with a naturopathic dr to look at issues with my stomach (Hashimotos) and my adrenals to find out what’s happening to my body . My intuition tells me it’s to do with my stomach I don’t think I absorb my medication properly!

Hopefully he will put me on the right path il keep you posted .

Take care

Kazbe 😀

I know the sweaty clammy as if you are going to pass out, heart racing. I get this every morning as I try to get out of bed. Unbeknown to me (I also tried NDT, but unsuccessful) my cortisol was so low in the mornings 137 and did not start to rise until after 2pm. My B12 was on the ground! and I had enlarged red blood cells. Possibly Celiac too. I am making slow progress with self injecting B12, getting iron up, on right vitamins and minerals (should be on cortisol for low cortisol but I don't want to be) :0( had to go back on levothyroxine but hoping when all this sorted I will go back on the NDT route. Been gluten free for 2 months now. I would like to say I noticed a difference but alas no! :0(

Kazbe I am going to recommend getting, B12, iron and cortisol checked. It maybe one or more of these stopping you being successful on NDT.

Hashi's doesn't stop you absorbing it. And, you are absorbing it. Your TSH is lower. It's quite natural that the FT4 has gone down because that's what it does when you take T3. And your FT3 is only 0.1 point lower, which is negligeable - especially if you didn't do the two tests at the same time of day.

You probably just need to increase your NDT. After all, 1 1/2 grains is only 76 mcg levo, more or less the same as you were taking when you took levo. But now you're also taking 18 mcg T3, which is a very tiny dose, and not likely to make much difference.

Do you take your NDT on an empty stomach and wait at least an hour before eating or drinking, just like levo? Do you take any other supplements or medication at the same time?

Kazbe
Kazbe in reply to greygoose

Thankyou Grey goose

I do take my NDT on an empty stomach each morning with a full glass of water. I think after 4 months I should of been on a higher dose , I was too cautious and took things too slow!

I didn’t realise that the T4 goes down whilst on NDT but even so my T3 hasn’t changed gone down slightly I thought the extra T3 would raise my levels and have me feeling much better . I don’t know what’s going on il try with the increase because I really do favour the more natural NDT . Another thing that has only just come to my attention I didn’t realise NT had fillers like Levo maybe it’s the fillers that I’m reacting to? There’s so many questions and things I don’t understand I’m still learning about thyroid disease and the different medications.

Thanks for replying and reassuring me it’s very kind of you.

Kazbe 😀

greygoose
greygoose in reply to Kazbe

I think if you had a reaction to the fillers, it would have started when you first started the NDT.

Don't worry about the FT3. These things happen. You're only on a teeny-weeny dose of T3, I wouldn't expect much improvement on that. But, you didn't answer my question : were both tests done at the same time of day? T3 has its own circadien rythme. It's highest in the morning and drops slightly throughout the day - not as big a drop as TSH, but a drop all the same. So, if the two tests weren't done at the same time of day, you can't compare them.

Kazbe
Kazbe in reply to greygoose

Sorry about the late reply Greygoose the blood tests were done 9am NHS and 10am Medichecks because I was doing finger prick test myself it was tedious and fiddly:(

Would the hours difference change things ?

I’ve took your advice and I’m increasing every 2 weeks by a quarter so hopefully if I can tolerate the increase I should feel better when correctly medicated.

I’m booking to see naturopathic dr to see if he can help with stomach and adrenal issues I also have high Cortisol so all these things could be contributing to how ill I feel .

Thankyou for your great advice

Kazbe

greygoose
greygoose in reply to Kazbe

The different times will make a difference, yes, but I don't know by how much. If doing medichecks the ideal would be to get up early and do it at 7 am.

Be very careful with the naturopath, they have some very strange ideas - especially when it comes to the endocrine system!

Apart from all the thyroid and nutritional considerations which must be addressed, you may well also have poor blood glucose control and/or hyperinsulinaemia (over-production of insulin, which is a precursor of type 2 diabetes). I suggest you read Dr Sarah Myhill's Prevent and Cure Diabetes for an explanation of what happens to you when on you are already on this path and you eat a meal containing sugar or other refined carbs. It should all sound very familiar!

Yesterday, I found myself trapped in an Ikea cafe with a very limited Monday menu. Every single item contained refined carbs and/or gluten. My normal diet is very low carb and gluten free, because I'm trying to reduce insulin production, stabilise my blood sugar, and lose some flipping weight... Anyway, 15-20 minutes after eating, I was a dizzy, faint, shaky, hot, sweaty blob. Luckily, there was plenty of furniture to collapse on!

Am certainly no expert but I found that teva levothyroxxine caused serious problems so now on different make. Hope it help

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