Don't know what else to do..!: Hi all,.I feel so... - Thyroid UK

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Don't know what else to do..!

Maya_83 profile image
18 Replies

Hi all,.I feel so lost and can't think of anything else to do..

I feel so ill, flu like symptoms, heavy head really struggling to get out of bed. I've had these issues on and off for years but recently just feels more frequent.

I used to take tiromel then switched to thyroid-s, was doing better but now downhill again.

I'm also on LDN which helped with the severe fatigue, but not anyone. 4 point saliva test all came low.

I inject b12 regularly.

Take vid d, magnesium, folate and b12

Also I feel confused and get really worked up if I get hungry so need to eat ASAP, does anyone know what this means ? My HbA1c is normal.

I know my free 3 are little low so I've increased my dose from 1 grain to 1.5. I also have lower my dose or increase regularly as I get headaches. I feel like I can never be on a stable dose. 😕

Any unexpected noise even small and i feel my heart can jump out of my skin. I get so frightened.

I find taking cough and flu capsules makes me feel better- obviously can't take it on a regular basis.

Does anyone have suggestions that I can try or do things differently?

Vit d 89

Free t3 4.8 (3.1- 6.8)

Tsh 0.03 (0.27- 4.2)

T4 12.7 ( 10.5- 24.5)

Ferritin 274 ( 13-150) I have a lot of inflammation

Serum sex hormones 33 (32- 128) looks low, what does that mean?

Folate 4.8 (3.9- 9999)

Temp 36.7

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Maya_83
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18 Replies
TiggerMe profile image
TiggerMeAmbassador

I'm sure the others will be along soon but I would suggest you need to get your folate level up, I think there are separate folate supplements for those like you on B12 jabs and don't take a B Complex

Also as you are on NDT you need to up your dose until non symptomatic rather than rely on blood tests and your bloods are showing your fT3/4 are low

Maya_83 profile image
Maya_83 in reply toTiggerMe

Thank you for your time. I can take separate folate as I have some.

When I went up to 1.3/4 NDT I had severe headaches and felt really unwell. Dropped it to 1.5 and felt loads better. That's why i feel unstable as I have to keep increasing or lowering.

I'm on 1.5 grains atm after the blood test

TiggerMe profile image
TiggerMeAmbassador in reply toMaya_83

I think improving folate will be a big help in tolerating thyroid hormones 🤗

SlowDragon profile image
SlowDragonAdministrator in reply toMaya_83

Do you split NDT as 2 doses per day

Perhaps Try adding some levothyroxine

Add 25mcg and retest in 6-8 weeks

Maya_83 profile image
Maya_83 in reply toSlowDragon

Hi SD, Yes I take my first dose 1 grain at 6am and 2nd dose at 6pm.

I feel really unwell with levo.😔

SlowDragon profile image
SlowDragonAdministrator in reply toMaya_83

I wasn’t suggesting only Levo

But if you can’t tolerate increasing NDT …..quite few members add Levo

Imaaan profile image
Imaaan in reply toSlowDragon

Maya_83 I used my ndt in conjunction with T4 to help me increase overtime to optimal. That was the only way I was able to tolerate an increase.

Getting your folate up will help God willingly. You're going to need a loading dose, perhaps ask for a prescription.

Another option is taking beef thyroid glandular along with the thyroid s which contains a higher t4/t3 ratio than porcine. I've used and loved Ancestral Beef Thyroid. Another UK member used them as well

Maya_83 profile image
Maya_83 in reply toImaaan

Hi Imaan,

Nice to hear from you.

I have prescription folate at home .( thank god) .

How are you taking the beef grandulars and how long did you have to take them for?

Imaaan profile image
Imaaan in reply toMaya_83

I took them a few months until I got optimal on my ndt. My thyroid glandular journey started when my TSH starting dipping low and my doctor wasn't happy so she refused to renew my T4 and wanted me to continue with my Erfa without increasing it. I wasnt anywhere near optimal so I ordered some from online.

I started out with 1 capsule taken at 12pm to see how I would tolerate and I was fine. Second day, I took 2 capsules at noon and was fine. 3rd day I took 2 at noon and 1 at 5pm. I stayed on this dose and increased my Erfa by 15 mg and after 6 weeks I retested and was blown away to be honest. My doctor was surprised as well.

My free t3 went slightly above range and my free t4 remained at 20 and the cut off was 23. My free t3 was below range when I first began taking ndt and it was always ay the low end of normal all my hypo life .The Ancestral Beef Thyroid kept my free t4 exactly the same as when I was taking my T4 meds along with the Erfa.

These past last 6 weeks I've stopped taking it because my free t4 increased to 23 . My nutrients have improved and my gut is slowly improving thanks to God. Plus I changed the timing of my first Erfa dosage to 4-530am and im probably absorbing meds better leading to an increase in my free t4

Maya_83 profile image
Maya_83 in reply toImaaan

How did you feel with all these changes? Did you feel well / better.

I know Paul Robinson says t4 shouldn't really matter as long as t3 is optimal and you feel well.

I have some thyrovanz lelt, maybe I can introduce it again.

Imaaan profile image
Imaaan in reply toMaya_83

It took me 11 months to get my free t3 and free t4 near optimal Alhamdulilah. It took another few months to be only on ndt (Erfa). I'm feeling better Alhamdulilah but I'm still dealing with other symptoms caused by my untreated sleep apnea.

With respect to Paul, we are all individuals and need what we need. In my case, I needed T4 and a good amount despite being an extremely poor converter according to Tania Smith. My T4/T3 ratio on T4 meds was atrocious and yet I still needed T4 meds to help me transition and increase my ndt doses. Without it , i would start experiencing an increase in my adrenal fatigue symptoms.

As for Thyrovanz, if I recall your T4 levels on it were horribly low. I'm not sure if it was because you had a bad batch or the product itself . Personally in your shoes I'd order Metavive (beef version) to accompany your Thyroid s or order some ancestral thyroid Beef.

I know a member on here that's using the Metavive porcine and beef glandular together. In the past she used metavive in combination with ancestral thyroid

Imaaan profile image
Imaaan

What is the lab range for the vit d? Also, have you ever done hijama?

Maya_83 profile image
Maya_83 in reply toImaaan

I can't really see lab ranges for vit d.

I did in the past but hijama made no difference tbh.

X

Imaaan profile image
Imaaan in reply toMaya_83

1. Vit D plays a role in inflammation amongst other things. If I were you, I'd pursue the vit d angle and figure out the ranges and see where I was at % wise.

2. Your ferratin is high, have you ever done an iron panel to see where your iron is at ? If it's high, you might want to consider having blood taken to reduce it . My doc said that's an option for those that have high iron.

3. Regarding hijama, I'm sure you know its Sunah benefits and so I wouldn't stop since you have a few health conditions

Pearlteapot profile image
Pearlteapot

normal hba1c does not exclude the possibility that you are experiencing high glucose spikes and drops. The hypoglaecemia of the drop would leave you hungry and hypo episodes over night would leave you tired and fatigued in the morning. There is a relationship between hypothyroidism and hypoglycaemia chriskresser.com/thyroid-bl...

You may need to take steps to balance your blood sugar to stop the peaks and troughs.

Maya_83 profile image
Maya_83 in reply toPearlteapot

Thank you for this article.

I think I need to get a fasting blood glucose done.

I also eat frequently during the day so I don't go hungry.. but you're right I'm definitely more agitated in the morning before I eat breakfast.

Pearlteapot profile image
Pearlteapot

fasting blood glucose test won’t show if you are having hypoglycaemic episodes (crashes). For that you need a continuous glucose monitor. There is an offer of a free trial here but I haven’t checked if free really is free. freestyle.abbott/uk-en/prod...

Summerlove profile image
Summerlove

Hi Maya

I know this post is couple of months old. I came across it as I too have same headaches. They come and go sometimes over my eyes feel eyes hurting above eyebrow, also stabbing pains in head and eyes. I have dry eyes, which makes matters worse. Also ringing in ears tinnitus. I take ibrufen but not too much as I also get acid reflux. I have tried hot and cold flannels, steam inhalation and warm wheat bags. I was diagnosed 7 years ago but like you have never felt well all the time. My thyroid antibodies are always high and my folate low. But if I take folic acid regularly it makes my anxiety worse and I’m all jittery. Mornings are terrible, dizzy, nauseous, anxious, yawning all the time. I take 50mcg of Levo. You mentioned about feeling like low blood sugars but HBA1c normal. I too have same and I have put it down to reactive hypoglycaemia. There is a good book by Glucose Goddess Jessie Inchaupse, she talks about balancing blood sugars. I hope you are feeling better especially as you have a young family. I now realise what a chronic illness hypothyroid is. You can look normal and do daily activities but inside you have these other issues. It’s hard to explain to people and you feel like you don’t want to burden them with your problems. Best wishes

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