I've posted here before regarding subclinical hypothyroidism, not sure what is causing it. I've ruled out celiac disease, I'm trying to take iron and b12 everyday, but still my tsh is consistently high.
My GP has agreed to trial 25mg levothyroxine. I'm really worried after reading how this can potentially make everything worse.
Looking at all my results over the past couple of years, can you please advise what you would do and how you would approach this?
I also have been told I have low white blood cell counts and not sure if this is related to hypothyroidism. I'm in health anxiety hell.
So far you have only tested TPO antibodies which is the way the NHS work. There are a different type - TG (Thyroglobulin) which you can test privately. A small percentage of Hashi patients never have positive antibodies.
A low dose of Levo can make things slightly worse initially. You could ask your GP to try a dose of 50mcgs as per NICE guidelines for average healthy people.
1.3.7 Consider starting levothyroxine at a dosage of 25 to 50 micrograms per day with titration for adults aged 65 and over and adults with a history of cardiovascular disease.
I wouldn't overthink reports of feeling worse as it doesnt happen to everyone and is short lived. You clearly need treatment so best to make a start.
Your ferritin is terribly low. A level of 30 or below is considered deficent by NICE Guidelines. Have you discussed this with your GP? I'd suggest you get a full iron panel especially if you have a low white cell count.
Try and get the same brand of Levo at each prescription. You may need to try a few to decide what works for you best. It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.
Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.
Your results are very similar to what mine were over the last few years. I started on 50mcg, initially after about 2 weeks I really thought I'd made a mistake because I had never felt so ill! But I persevered and after another couple of weeks I started feeling better than I had in years . I'm still only on 50mcg (I'm not a large person) my levels are better and I feel healthy. Good luck.
My GP said my T4 and T3 are in range so I should not need medication because all this will do is increase T4 unnecessarily, and could potentially cause hyperthyroidism.
He eventually said we can try levothyroxine but that it could make things worse, which as you can imagine did not exactly reassure me to want to take it.
Anyone able to shed any light on whether he is correct?
I’m afraid he is trying to scare you because they don’t really want to treat you, it means that once you start Levothyroxine, you’ll have to have regular blood tests and you’ll get ALL prescriptions free. When your thyroid is failing it puts out more T3 to compensate for the low T4 so that is not unusual. Also your adrenals will try and take up the slack which could cause more problems down the line.
Ps you guys are amazing. I'm also gonna book with Melissa Cohen for a chat. I just want to be better. Im also off work due to mental health. Life is hard at the moment.
I'm not sure. I had my appointment today with Melissa Cohen (recommended by thyroid uk) and she also said she thought not to start the thyroid med yet and to try diet and lifestyle. Hence I'm even more confused! Guess it's interesting to have different perspectives.
I have sub-clinical hypothyroidism and it amuses me when it is suggested to improve diet and lifestyle.
Because in my case:
1. I've always had no choice in having a good diet, as any artificially flavours/colourings/enhancers would cause reactions from a guts ache to hyperactivity to an all over body rash; and in recent times, even the foods I could tolerate have begun to cause reactions
2. Always been physically active, even in adult life when all exercise caused fatigue and pain for days afterwards
3. Always been iron deficient despite the healthy diet with lots of fresh vegetables and red meat included, and only able to maintain iron levels with tablets
Despite this enforced "good living", I still ended up resting/dozing on my couch most of the day, and if I had to go out for a few hours, then it was back to the couch and sleeping deeply for hours afterwards to recover.
In the early years I needed a day at home after going out the day before working/whatever but in recent times the at-home recovery period has stretched to two or more days.
Just before I was prescribed levo, I had the beginnings of anxiety -with absolutely no external causes. Except, of course, that my thyroid was packing it in.
Yes, I have to take NDT for the rest of my life.
But who would choose to live a life being almost bed-bound, in pain, mind so foggy you're never truly awake, food-digestion problems, liver & kidney disease & pre-diabetes (all thyroid-induced) just to avoid taking Levo or NDT?
A dr would never ask a diabetic or heart patient to delay treatment.
Anxiousjojo I think you're on the right path by being on this website, reading peoples' lived experience, as well as the data and research links provided.
You will learn that you have to depend on yourself and not the medical profession to get the right treatment for you; unless you are very, very lucky to strike the rare medical professional that will treat you to "optimal", rather than by TSH/theoretical figures/national budget constraints on medical care.
If it weren't for all the helpful people on this site, I would never have found out all the options to ensure I was, finally, having the cause treated, rather than all the many, many different consequences of thyroid disease.
My experience is far from the worst but after a life-time of suffering leading to not able to live any sort of life, I am relieved to finally be on the correct treatment.
Titrating NDT/levo is not always easy or quick, as I've also found out from on here.
Without the practical advice and information from all the good people, I would've thought levo/NDT wasn't for me, and given up. On more than just the medication.
Anxiousjojo , I know your Topic question was three months ago and your last post in here was two months ago. Have you got an update on what you decided?
Wishing you the very best, and a resolution to your "anxiety health hell".
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