Please help feel awful!: Hi, hoping for some... - Thyroid UK

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Please help feel awful!

SeaVee79 profile image
20 Replies

Hi, hoping for some advice.

Have been on medication for my hashis for 8 wks now (first Levo and now armour for 2 weeks (2grains) and initially I felt a bit better with more energy but in the last week or so I have gone down hill. No energy, all I've done today is sleep when I can (in between looking after my daughter etc). I'm cold all the time, have a headache most days, have had candida for about 5 months, constant breathlessness, have no energy to do anything other than the basics of getting through the day.

When I talk to my doctor he tells me that yes they are all hypo symptoms and until my dose is correct I'll feel bad.

But I can't afford to feel this awful all the time, it's really affecting my life and my happiness :(

I thought that now I had started medication I thought I would slowly improve? My iron is a bit low which I am supplementing, b12 is fine and vit d is in the adequate range.

I have gone gluten free and I am following the candida diet to at least keep my symptoms under control, as doctors don't even acknowledge that it exists they can't help (and the fluconazole I have had makes no difference).

Is it normal to feel worse before I feel better? Or am I doing something wrong? I Always take meds on an empty stomach with vit c to help. I haven't had a cortisol test yet but maybe that needs checking (just that the ££ adds up).

Thanks in advance for any advice

Chloe

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SeaVee79
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shaws profile image
shawsAdministrator

It's quite normal to feel awful until properly medicated. I wonder if your 2 grains is too high for you at present as it is usually a gradual working up to a dose.

For instance normally 50mcg levo is a starting dose and after 6 weeks a 25mcg increase and so on. 2 grains is equal in effect to approx 200 mcg of levo. Maybe if you drop down to about 1 grain and wait around 2 weeks at least to see how your symptoms are and then increase about 1/2 grain if you still have symptoms until they have eased off.

It is a struggle initially but we can get their but there is no way you can rush it.

SeaVee79 profile image
SeaVee79 in reply to shaws

Yes maybe I should drop down slightly although my symptoms don't seem to be those of over medication.. What do you think?

Maybe I had misunderstood but I was under the impression you should raise ndt slightly quicker than Levo (like every 2 wks)? I read it somewhere, poss sttm website. It's all pretty confusing without the guidance of a doctor. Thankfully you guys are all here to help. Thankyou so much.

shaws profile image
shawsAdministrator in reply to SeaVee79

You said you were on 50mcg of levo - I assume for six weeks and NDT for 2 weeks. If that's the case you should have begun 1/2 gr of NDT to begin with. Yes, you can increase NDT every 2 weeks but not a huge jump from 50mcg levo to equivalent of 200 approx of NDT in an instant.

Sometimes it's difficult to tell too much from too little. When taking NDT you should take a record of your temp and pulse at least 3 times a day and note how you feel. ie. any symptoms or feeling better etc. etc.

You have to post your B12 and Vit D levels - 'fine' or o.k. is not sufficient. Both are hormones and can cause symptoms too if low. B12 should be towards the upper level and Vit D. This is an excerpt from a link by Clutter, another Admin:

VitD is low. Optimal is 75-200. Most are happy with just >100. Supplement 2-3,000iu daily until the end of April when ultraviolet light is strong enough to stimulate vitD if you can get a few hours of sun on your face and arms weekly.

Take vitD3 4 hours away from Levothyroxine.

B12 <500 can cause neurological symptoms so supplement 1,000mcg methylcobalamin sublingual lozenges, spray or patches daily. Take a B Complex vitamin which has the RDA of folic acid to improve your folate and to keep the other B vitamins balanced.

healthunlocked.com/thyroidu...

So start afresh and baby steps at first till you reach a level where you feel good with, ideally, no symptoms. Sometimes we have to trial a few NDTs to find one that 'fits' but you may be lucky and this one suits.

SeaVee79 profile image
SeaVee79 in reply to shaws

Thanks for info, vit d - 56.9 and b12 - 669 . I will get some vit d softgels to try and get it up a bit and I will drop my ndt down slightly. It seems I went in too high! So want to feel better. Life is so hard when you feel bad day in day out. But I hear you, baby steps. Thanks again.

Clutter profile image
Clutter in reply to SeaVee79

Chloe, I think STTM's advice to start at 2 grains isn't appropriate for for people on lower doses of Levothyroxine. You had only been on Levothyroxine a few weeks and it barely had a chance to metabolise. You were presumably on 50-75mcg whereas 2 grains is bioactively equivalent to 150-200mcg Levothyroxine so you may be overmedicated. When starting NDT it is better to start at half a grain and increase by half a grain every 2 weeks then hold at 2 grains for 4-6 weeks and have a blood test to check levels. I think STTM advise holding a 3 grains,which I also think is too much, before testing levels.

thyrophoenix.com/adjusting_...

thyroid.about.com/od/thyroi...

If vitD is in the adequate range you may benefit from supplementing until it is in the optimal range 75-200. Most are comfortable just >100. Supplement 2-3,000iu softgel capsules or spray until end of April when ultraviolet light is strong enough to stimulate vitD if you can get sun on your face and arms a few hours each week. Take vitD with the fattiest meal of the day as fat aids absorption and 4 hours away from Levothyroxine.

SeaVee79 profile image
SeaVee79 in reply to Clutter

Thanks, yes I think I may have followed sttm too literally, I will drop my ndt dose down slightly and try again. Must get a heart rate monitor so I can check that too.

galathea profile image
galathea

Here is a link on how to dose with natural thyroid. tpauk.com/forum/resources/t...

Xx

SeaVee79 profile image
SeaVee79 in reply to galathea

Thanks galathea, some good stuff there to chew over! Fab.

Heloise profile image
Heloise

Chloe, I'm inclined to think that breathlessness is indicating an overdose. When hypo, you usually have air hunger. You've had 14 days in which you almost doubled your daily dose and so your blood levels have been building twice as fast as when on Levo. You haven't said how much levo you were taking but is this correct? You started on 50 mcg. of levothyroxine and then increased it during the 8 weeks before starting on Armour and perhaps you were taking 100 mcg. Then you could have begun one grain of Armour to get used to the natural product and then increase as necessary.

I agree with Shaws about dropping down to one grain. I might even consider skipping a dose or two entirely if these symptoms continue. After ten weeks you certainly deserve to have your TSH, FT4 and FT3 tested and with your symptoms, it really is imperative that your doctor not GUESS these are hypo symptoms rather than hyper.

SeaVee79 profile image
SeaVee79 in reply to Heloise

Hi Heliose, yes, I was on 50 mcg Levo and started on 1 grain ndt which I rose rather too quickly to 2 grains, meaning I didn't necessarily wait even 2 wks between each raise. I am realising now from everyone's help why I cannot do this, it's difficult as I just want to feel better so was over keen ( I have a one year old to entertain most days who requires utmost energy!!:) I have dropped down to one grain and I will stick at that until my next bloods. Yes, I would like a doc to take ongoing symptoms more seriously but at the end of the day, I have found a doc who will prescribe ndt early on so I have been very lucky. Now need to 'train' him up I guess!

Heloise profile image
Heloise in reply to SeaVee79

That's good about your new doc. He appears someone you can at least work with. I was on Armour for many years and did well except my doctors felt that TSH at 2 or even 3 was good enough. I didn't know any better myself or would have been more careful about keeping it lower. It's important.

Heloise profile image
Heloise in reply to SeaVee79

Just another caution that if this is clearly too much hormone, you will be adding as much hormone as you will be reducing due to the new dose (if you take one grain) ........so you may still feel the overdose until that evens out. It may take two weeks since the half life of T4 is around two weeks.

SeaVee79 profile image
SeaVee79 in reply to Heloise

Thanks, who knows whats going on, was freezing cold all day and knackered. Have dropped down and will stick with it for two weeks despite feeling bad. x

Heloise profile image
Heloise in reply to SeaVee79

Chloe, have you decided it was over medication. Is the breathlessness better?

SeaVee79 profile image
SeaVee79 in reply to Heloise

To be honest I'm not sure, I reduced dose because so many people seemed to think that was an important point and I agree I rose too quick. However, don't feel much better. Cold all the time, wheezy. I don't know how long I should wait thought to expect results from a dose change, do you? X

Heloise profile image
Heloise in reply to SeaVee79

Chloe, Shaws recommended taking your temperature three or four times a day and also your pulse. I don't know the exact interpretations but if you can do this, I'll look it up. It may be a clue because it still could be either high or low.

SeaVee79 profile image
SeaVee79 in reply to Heloise

Thankyou for your help. I have just got a blood pressure monitor so can do that, pulse and temp starting tomo. Odd thing is one side of my tongue is always a degree lower than the other side!!? X

Heloise profile image
Heloise in reply to SeaVee79

That is interesting. I think people do have one-sided complaints. Mine are mostly on my right side.

My monitor checks heartrate as well.

Klagh profile image
Klagh

T3 thyroid hormone only has a half-life of about 3-5 hours (depending on the person), so the T3 in the Armour could possibly be out of your system by 11 a.m. to noon, depending on when you take the Armour, leaving you to feel bad the rest of the day. That was my experience on Armour. Have your checked to see what your return T3 is? Even IF your return T3 number is "within range," there is still no guarantee that the T3 is being adequately distributed throughout your body and getting into the tissues. You could investigate time-released Armour; you may also need to evaluate whether you are allergic to the fillers and binders in the Armour. Again, that was my experience with Armour. If you are allergic to fillers and binders, maybe it would help to get your scrip filled at a compounding pharmacy and adamantly specify NO fillers and binders. You need to have optimal gut health (managed with probiotics) to adequately absorb your thyroid meds. You will have to do a lot of detective work. Very best of luck to you on your journey to manage your condition.

SeaVee79 profile image
SeaVee79 in reply to Klagh

thanks, yes i feel like an information detective! i defo feel the t3 going in and get a boost which is always appreaciated. Would love to get my armour mixed with something more 'healthy' however, the struggle to just get it prescribed was enough (im in the uk) and im not sure we have compounding pharmacys over here. Thanks again for reply.

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