I had 2 bad anxiety attacks last year October, got them at night, stayed in hospital both times where they did every test and Xray possible, even thyroid test, they found nothing wrong.
In January this year my GP saw that I jad a large goiter, so I had a bilateral subtotal Thyroidectomy in May, since it was huge both sides. They started me on 100mcg Eltroxin, which made me terribly sick, so they reduced it to 50mcg and after 6 weeks to 62.5mcg. I am due for bloodwork this week and will probably be on 75mcg until the next bloodwork.
But, I am now, after the operation feeling under the weather constantly. Very tired recently, my left shoulder has loads of spasms, my joints sore as well. My chest will cramp sometimes (had a lot of cardio tests -nothing wrong), especially on my period. My right hand middle finger seems to have some nerve issue, as it goes numb sometimes.
My last bloodwork showed by TSH to be 6 and my Iron low, the rest were all fine.
Please tell me that this is all normal and will go away in a few months after my levels are optimal? 🥺
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Stella3834
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My last bloodwork showed by TSH to be 6 and my Iron low, the rest were all fine.
Generally, patients on Levo feel best when TSH is down to about 1 (or below) with FT4 and FT3 in the upper part of their reference ranges. Your Levo will need to continue to be increased but ask for FT4 and FT3 to be tested as well.
What's being done about your low iron?
What are these "fine" results for the other tests? Can you please post them with their refrence ranges and members will be able to comment.
Those results show your FT4 to be 26.4% through it's range and your FT3 29% through range. When your TSH is down to around 1 or below, FT4 and FT3 should be in balance in the upper part of the range, which is where most people feel well so you may be looking at FT4 around 16+ and FT3 around 4.7+
When doing thyroid tests, we advise:
* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.
* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.
* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it will give false results (Medichecks definitely use Biotin, they have confirmed this and the amount of time to leave the supplement off).
These are patient to patient tips which we don't discuss with doctors or phlebotomists.
Your symptoms may be due to your poor thyroid results. Make sure you are retested 6-8 weeks after your next increase, continue testing/increasing levery 6-8 weeks until your levels are where they need to be for you to feel well.
It's also worth testing
Vit D
B12
Folate
as optimal nutrient levels are needed for thyroid hormone to work properly.
Ferritin needs to be around 70+ so make sure that is retested too.
Are you taking your iron tablets with Vic C - 1000mg is recommended with each tablet.
Also, take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, and water only for an hour either side, as absorption will be affected. Take any other medication and supplements 2 hours away from Levo, iron and some others need 4 hours.
So all the symptoms that I am experiencing is part of being hypo?
I didn't say that, I said they may be due to your poor results.
But it's possible that some symptoms are linked to poor nutrient levels and poor nutrient levels mean that thyroid hormone can't work properly. This is why it's important to test vitamins and minerals.
You are taking an iron supplement, so presumably for this to be prescribed your ferritin level was very low. Check out what can be associated with low ferritin here:
Vit D - 100-150nmol/L (40-60ng/ml) according to the Vit D Council/Vit D Society.
B12 - for serum B12 at least 550pg/ml (ng/L), better at top of range; for Active B12 minimun 70 (below that suggests testing for B12 deficiency), better over 100.
Folate - at least half way through range.
Ferritin - at least 70, for females I've seen it recommended that a good level is 100-130.
Once these levels are reached, adjust supplement dose to maintain at these levels.
So this needs improving, I'd aim for 50-60ng/ml. What dose of D3 are you currently taking?
VITAMIN B12 - 364 pmol/L = 493pg/ml
According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
So this could also benefit from improving.
The others need ranges so I can't comment but you can work out how your iron is if you have the ranges from the following which gives the optimal levels:
That should be enough. I'd retest Vit D in 3 months. When you've reached the recommended level then adjust dose to maintain that level, retest twice a year to check you remain at the recommended level.
"They started me on 100mcg Eltroxin, which made me terribly sick..."
The problem with thyroid is that nothing happens fast. Your body needs time to adjust to having replacement thyroxine. It's like riding a horse that keeps going gradually slower. You give it a flick with the whip and it starts going a bit faster, but not fast enough. But if you hit it too hard, it's likely to bolt instead!
I am just on a low today and struggle to cope. We cant run to the ER with every chest pain and rib pain and some days are just so difficult. I am losing a lot of weight, don't sleep well, have terrible anxiety and is just very emotional.
Depression and anxiety are themselves symptoms of hypothyroidism (agitation more likely to be hyper, though you probably went through that, and more, before your operation). Hopefully you will soon begin to feel better - it's early days yet.
Might be a good idea to ring the doctor for advice anyway. If the doctor is sympathetic, a telephone consultation might be all you need for now to give you courage to go on until you do start to feel better.
Don't accept antidepressants though. I think they interfere with absorption of thyroxine and are likely to make things worse. Is that right SeasideSusie ?
When I first had bad symptoms of hypothyroidism (nowhere near as bad as you!) I would sit for hours most days with no energy to do anything, wondering how soon I could be tired enough to go to bed. Doing anything was almost impossible, it was as if my brain had seized up. I wasn't depressed as such, but the sheer boredom was horrible (there wasn't enough mental energy to even think anything interesting, let alone read or watch a film or something) and the thought of being like that for days, let alone years, was terrifying.
Don't accept antidepressants though. I think they interfere with absorption of thyroxine and are likely to make things worse. Is that right SeasideSusie?
They're certainly not good bedfellows. SSRI (and tricyclic) antidepressants can interact with Levo.
The selective serotonin reuptake inhibitor (SSRI) sertraline (ZOLOFT), widely prescribed for depression, has been associated with a decrease in the effect of levothyroxine. Further studies are needed on this, and on any similar effects of other SSRIs.
It is early days for you post thyroid surgery some two months, but it is most important that your vitamins and minerals are maintained at optimal levels, to assist your thyroid hormone replacement in converting the T4 that is Eltroxin into T3 which is what the body runs on.
Just for reference a fully functioning working thyroid would be supporting you daily with approximately 100 T4 + 10 T3 . Some people can get by on T4 alone, some people simply stop converting T4 into T3 at some point in time, and some people simply need both these vital hormones dosed and monitored independently to bring them into balance and to a level of wellbeing acceptable to the patient, which generally means that both essential hormones will be in the upper quadrants of their relevant ranges.
Personally I think if there has been a medical intervention and the thyroid either surgically removed or ablated with RAI both these vital hormones should be on the patients prescription for if, and maybe when, both hormones need to be supplemented.
I have Graves Disease and had my thyroid ablated with RAI in 2005.
Thanks to this amazing website I'm getting my life back on track.
I am now self medicating and purchasing my own thyroid hormone replacements and am using Natural Desiccated Thyroid.
This is a very good book to keep you company whilst recovering :-
Written by a doctor who has himself hypothyroidism - Dr Barry Durrant - Peatfield.
Your Thyroid and How To Keep It Healthy - it's an easy, insightful, sometimes funny read on all things thyroid. We may now not have this major gland but we do need to know what it does so we can try and compensate accordingly.
I had a TT 5 months ago for Graves and toxic multinodular goiter, and experienced much of what you are going through with severe anxiety and emotionality. Hang in there - there is light at the end of the tunnel. If you click on my name should you be interested, I have posted the details of what happened to me post-surgery. I am much better, and I believe once you have adjusted to your meds, you will be too. You've already gotten great advice and there isn't much for me to add - other than to send you all the best for your recovery and good thoughts for today. I know how hard it can be to cope.
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