Trialling Levo only after an issue with NDT, se... - Thyroid UK

Thyroid UK

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Trialling Levo only after an issue with NDT, severe headache subsided to a point, BUT now feeling brain fog, fatigue and very bloated belly.

8 Replies

On first diagnosis, I was prescribed Levothyroxine and reached 100mg until I became pregnant with twins 13 years ago and had to increase it to 300mg, put on tons of weight, and it wouldn't shift after the birth. Fatigue also plagued me. After no support from the NHS, I decided to try NDT, being Thyroid S due to affordability and no need for prescription. Reached 2 grains or 2 1/2 depending on the batch for numerous years with better success than Levo and lost all the weight. My current issue to date is with my latest batch, which I started around 2 months ago. After a week taking it, I started getting a severe pressure headache affecting my eyes, jaw and glands in my neck, and high blood pressure. After several weeks feeling pretty deathly and in a lot of pain, I came off the NDT, and started to trial T3, but the headache came back if I had more than 6mg at a time. I thought perhaps it may be the T3 which is the problem even though I do not convert T4 to Ft3 very well, hence my previous Levo weight gain. In desperation to feel better, I have resorted to trialling Levothyroxine once again. The head pressure has subsided somewhat to manageable, the blood pressure is lower although I have had to resort to blood pressure meds temporarily to help that.... But, and a big but for me, is fatigue and brain fog is creeping in, and I now have a very bloated belly and I'm very worried about gaining weight again. I have just had a blood test done to see where I'm at level wise after the changes in meds, and I'm awaiting on the results. My T3 is probably pretty low now, so the bloating is probably due to that or the Levo itself. It's certainly not helping with the fatigue. I feel pretty sluggish now, which I didn't feel on NDT originally. Any thoughts on how I can stop the bloating, prevent weight gain and head fatigue would be appreciated. I am currently taking a B complex (including B12), Zinc, C and D3 with K2 all in pure spray form. I have iron tablets but do not take it every day as my levels did not show a deficiency but was not in the upper range. I also have a magnesium spray recommended due to better absorption, but it makes my skin itch, so have held back on that.

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8 Replies
Hookie01 profile image
Hookie01

Hey, how old are you? Any chance it could be peri menopause? The symptoms are very similar. Suffering the same myself, had enough now, gonna call the Drs today.

in reply to Hookie01

I'm 53 and in the menopause, which I have been for some time. These issues only started (weight gain/bloating, brain fog) when I started taking Levothyroxine on it's own. I think I may have to try and introduce the T3 again. Woke up feeling bloated, with distended stomach and sluggish. I don't do well both physically and emotionally when I am over weight, so this is a priority issue for me. I have been recommended HRT previously for bone loss, but until I get my thyroid issues rectified, I don't want to start on that yet. What's your story in terms of your symptoms and what do you take?

Hookie01 profile image
Hookie01 in reply to

Which brand are you taking? I've always been on levo, never found the right dose. I've been trying to take t3 for a few years but I need lactose free so was pretty difficult to source it, but I've finally talked my endo into putting lactose free on the prescription. I'm on roma capsules at the moment. Will admit I am less bloated but then I've recently been diagnosed with a fatty liver so have stopped drinking and changed how I eat, so not really sure which is making the most difference.

I'm still struggling with brain fog, joint pain, night sweats, fatigue etc. I'm 44 so the drs really don't want to entertain me. The only thing I have noticed is that if I reduce my meds my joint pain goes and my mood stabilises. I have read that when oestrogen drops your body absorbs more of the meds, so might be why I am having to reduce them 🤷‍♀️

I would love to try NDT but can't afford it. Thyroid S contains lactose so couldn't have them sadly.

I was going to add something else but I really can't remember what!! It might come to me later lol.

in reply to Hookie01

I'm sorry to hear you're not sorted treatment wise either. It's certainly a rollercoaster ride this thyroid journey 🙄. I was Thyroid S for years. and apart from head fatigue about an hour after taking it, I was OK as it subsided as the day went on. Either a faulty batch, or a change in the formulation changed that in terms of the headache I was getting. I am taking Wockhardt Levo as the other brands was worse and made me have itching and prickly heat. I really don't like being on Levo as I need the T3, but I think the synthetic form is more potent than the NDT T3 component, and the headache restarted when I started to trial that. It's interesting about the oestrogen. Perhaps the headaches are due to over medicating, as I do feel generally better when I don't take the meds 🤔. Treating yourself is very expensive whatever you take. I'd love you try Armour, but you need a mortgage to buy that, lol.

in reply to Hookie01

Forgot to mention if you thought of HRT? I tried Lactose free Levo years ago, but felt awful on it. It's worth a try. If you're Lactose intolerant, your Gp shouldn't be prescribing anything with Lactose, that's dangerous.

Hookie01 profile image
Hookie01 in reply to

I haven't tried HRT but I think I am going to have to push for it as my head is just awful. I'm on Aristo levo, can't take teva, makes me depressed. Just wish I had never taken RAI, I think over active thyroid was easier to treat 😕 never mind, too late now!

jamesal0 profile image
jamesal0

Just go down to 1 grain NDT for a few weeks and then start coming back up slowly, when you sense the headache dont go any further. After a few months try again. You're perfectly normal and you'll be fine.

J

in reply to jamesal0

Thanks for the suggestion Jamesa10. I did come off it altogether and trialled it again with 1/2 grain but the head sored. Perhaps it's a faulty batch, or they changed the formula ( even though the manufacturer claims not). I took Thyroid S, I can't afford any other NDT unfortunately. As soon as the headache comes back, I stop whatever I'm taking because the headache is too painful. I am also having some high blood pressure, so I thought the NDT or T3 was causing that. My doctor said that the headaches are probably not caused by the BP itself, as it isn't high enough. They claim it's the NDT. What NDT do you take? I'd love to try Armour, but that's out the question financially for me. No Endo or Dr will prescribe that for me where I live.

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