Feeling scared and alone - Levothyroxine ruining my life

Hormones
1

I'm writing this in a desperate way, and any advice could honestly make me feel less alone with this horrible situation .

I'll try not to ramble too much.

Basically I have been diagnosed with hypothyroidism and for the past year my struggle has been with levothyroxine.

They started me off on 25mg a day and this caused me to have major episodes of palpitations with an accelerated heart rate. 

So they lowered my dosage to 12.5mg a day and the palpitations stopped but I have other side effects that are ruining my life.

It might sound dramatic, but it has made me feel so jittery, nervous and anxious that the past week I've just come home crying every day with bouts of panic attack.

I suffer from anxiety, and get awful physical symptoms such as tingling and numbness on my face (this has been classed as anxiety, clear MRI, etc)  and only appears when I feel really anxious.

Since taking the levo regularly, these symptoms have come back full force and I'm finding it unbearable. I also get prickly heat feeling in my head and body, feeling very warm. 

I am completely on my last legs with this medication and I just don't know what to do. My DR doesn't seem to know much about hypothyroidism, and living in Scotland in the Highlands there aren't really many specialists I can find.

I'm considering stopping taking the levo because I'm actually starting to have no quality of life with these side effects.

I don't know of any alternatives? Or if the side effects will disappear once I get used to the levothyroxine? 

Please, please, please any advice or help I would be super appreciative. 

I really feel I can't go on like this.

Thank you.

2

hello Heather,I had the same problem with Levothyroxine but there are other ways to treat your symptoms,have you checked Thyroid UK ,Also there are great thyroid groups on Facebook that are very supportive.I self medicate now after years of being ill with my Thyroid which went undiagnosed for years before I was put on medication.You need to know that there is help so do not despair.You need to read all you can on the subject & join a group where there are lots of fellow sufferers who will have been through what you are going through at the moment.It's a long journey & you will have to learn all you can along the way but you can do it,I have.

3

It's true to say that many doctors are not very knowledgeable about hypothyroidism.  They are always guided by specialists.  You will need to press your doctor for an appointment with an endocrinologist.  Speak to a pharmacist for advice also, though there seems little room for movement since no other drugs are given, and this is unlikely to change for quite some time.  Whilst you feel alone, rest assured that you are not.  There is also a facebook page for those with this condition.  Be careful not to make any sudden decision to stop taking the drug without medical advice.  Also take care not to follow advice blindly  from others without doing a bit of research first.   

4

Hi Heather,I support what's just been said.Please don't take yourself off medication.Ask for an endocrinologist referral.Research as much as you can.Join the thyroid facebook groups,and also google 'Unacceptable side effects of Levothyroxine ',which should take you to another discussion on patient.info.Keep in touch.We're all supportive on here.Gill.

5

Thank you so much for each of your replies, It really helps to have other people in similar situations and makes me feel less alone.

I am trying to find a good Scottish endo that specialises in hypothyroidism but I am unable to really find any sad And referral through the NHS will take forever.

Do you think I should lower my levo dosage even more? Or mabye take it alternating days? I just can't deal with the side effects anymore, my anxiety is doubly bad because of it. 

I'm also checking out natural thyroid meds, does anyone have any info on them and their effectiveness? 

And links to facebook pages?

Deepest thank you's again guys smile xxx

6

Hi Heather,Facebook groups Hypothyroid UK and Thyroid problems UK are ones to try.Lovely supportive people on them.I'd try Thyroid problems UK first.

Sorry can't help about what to do with medication.I'm on 200mcg,and also don't feel it suits me,but I have an appointment with an Endo in June in Oxford.Gill

7

Hi heather,

It sounds like you may be on too much thyroxine.

Have you had a blood test in the last 4-6 weeks? If not, it may be a good idea to go back to you doctor, tell him your symptoms and see if you get asked to get a blood test. You need to have the blood test done before changing the dose. Remember not to take thyroxine on the day of the blood test until after it has been done (else it will cause an inaccurate result). Also book a doctor's appointment afterwards for when the blood test results are back.

8

Hi Heather, I would also recommend the facebook groups on here. There are also a coulple of good books available on Amazon 'Your Thyroid and how to keep it healthy' by Dr Barry Durrant Peatfield and 'Hashimotos Thyroiditis Lifestyle interventions for finding and treating the Root Cause'. Id particularly recommend the 2nd one. I would also ask your doctor for a print out of all your test results, there are some very knowledgeable people on the FB sites who can help you interpret your results, and can often recommend diet and supplements that will help you. If you havent already, ask your doctor to check your Vit B12, Iron and Vit D levels. Its also worth asking for liver function tests. (My doctor did all these automaticaly, so NHS shouldnt bat an eyelid at this request). Could also be worth reading up a bit about cortisol and its reaction with thyroxine, that may answer a few questions, but may create more!! You are not alone in all this, hang in there, and fight your corner with your doctor.

9

Hello Heather - I am an RN (nurse) and I live in USA.  Levo is not for everyone.  I am 54 and when I first started on meds I was 27.  Levo did not agree w/ me and I had mal-absorption problems with it.  You do need to see an Endocrinologist who specializes in glands in the body. Your thyroid is called "The Master Gland" and it does a number of things in your body.

1. It regulates body temperature.

2. Causes an egg to ripen so you can get a period

3. controls metabolism

4. works with other glands like Pituitary Gland.

Now in life as we age and in some of us, mostly women, our bodies go through changes, and the gland acts up and goes haywire.  It may go low or high.  In some it does not work at all.  They can't transplant glands yet, as the body will reject it. So they came up with meds that are made synthetically.   Some work and some don't.  Now most people are on Levo but there are other meds. You need a darn good GP or Endo doc. some other brands are Armour Natural Thyroid, Cytomel, Thyrolar, and others....side effects can be nasty and if  you had what I had, which was loose bowels, I changed meds. lucky for me I have a good doc. Be your own advocate and say, "this med is making me feel bad, I want to try another..."  Please call to see the doctor. You are not alone, many of us have thyroid problems. Thyroid meds take time to work in the body.  Some meds can take a month or longer before feeling better.

It sounds like an adverse reaction or side effect and just call and make an appt. Please do not stop the med, unless you are having severe loose bowels or unable to breathe, or respiartory distress. then go to an Emergency Room if that happens. 

There are other meds, so be strong, ask for that.  I hope this helps.

10

Hi Heather,  Sorry to hear of your recent struggles.  My opinion is that you may have been incorrectly diagnosed with hypothyroidism.  GP's are notoriously inept at managing thyroid problems and will make a diagnosis using the TSH alone .. this can be a disaster and lead to much misery for patients.

If you stop taking the medication and feel better for it .. that will give you the answer to your problems.  The extra anxiety, heat and jittery feelings can be caused by being overmedicated.

You must research thyroid conditions for yourself (don't be overwhelmed) there is a lot of information on the web .. just consider what you read and you will have some sort of understanding of how to look after yourself.

When first given a diagnosis of hypothyroidism most people are overwhelmed and rely and hang onto their doctors every word .. many of these doctors don't have a clue about thyroid conditions (this I have learned the hard way) as have many others.  It's your body and only 'you' know that something is not right.

 

11

Its good to remember that depression is a common symptom of an underactive thyroid. To alleviate all symptoms its so important to be on the right medication. For the majority of people that is levothyroxine but it can take some trial to get the right dose. This is determined by how you feel NOT by what your blood tests say. Others require different medication - often because they dont convert the T4 (levo) to T3 which is the active hormone we need. Theres lots of support - so glad you found some here

12

Hi Heather,   I realise you're overwhelmed with info from other replies, so I'll just mention one thing -  panic attacks, anxiety, and palpitations are ALL symptoms of magnesium deficiency - as are insomnia,  muscle cramps, feeling irritable,  lack of concentration.  Please google it.  This is a vital mineral that your body needs, and being stressed and ill, and on medications removes even more magnesium from our bodies.   I would hand on heart, get some today. Anything your body doesnt need gets sent to your bladder.    I'd also support what lisa says - finding a book or articles that get to the root cause of it will be the key to getting better.   best wishes.    

13

Thank you a million times to everyone that's replied. I'm in the dr's waiting room just now so fingers crossed I'll be able to get some questions answered. I'll keep you all posted.

Thank you again guys. I really appreciate it.

14

YAY!! GO GIRL

Let us all know how you got on

15

Hi everyone - sorry for the delay in replying. I've been trying to just follow my DR's advice and not google or come on boards because I don't want to get any scary information. My health anxiety is through the roof with all this sad but I really need some advice again if you all don't mind.

My dr basically told me the other day that my thyroid levels are not high enough to warrant taking a drug that produces so many awful side effects for me.

He said to stop taking the levothyroxine for a month and see how I get on. I've stopped it for 4 days now and I'm starting to feel absolutely exhausted, achey and have my undereye bags back sad

Now baring in mind that my anxiety and stress has been through the roof so this could all be because of that.

But he also said my antibodies are high do presumably I have hashimotos no?

He even got a second opinion from another dr before confirming his opinion that I should come off the meds.

I have started taking ashwagandha and rhodiola because I've read a lot about these drugs helping thyroid.

What would you guys do!? Should I start on Levo again maybe 12.5mg every second day? Or follow his advice and see how I go for a month? I'm so desperately fed up and confused by all this. I'm trying my best just to charge ahead but it's useless if I just feel bad all the time. I can't bear it guys sad please any help would be appreciated. Xxx

16

Hi again Heather,  I wanted to reply to you because you appear to be quite distressed by what is happening with your health.  I don't agree with your doctor when he says not to search for information on the internet.  For some of us that is the only way we were able to gain the knowledge to give ourselves a better life.  There is much information out there and you 'must' learn as much as you can if you are to improve your situation.

As to your question about the high antibodies .. I would think that you probably do have the beginnings of Hashimotos .. but you need the correct tests to be done to confirm this.  Are you able to see an endocrinologist? .. they are likely to be able to do the correct tests for you.  Ask your gp to refer you - you might have to travel a distance to see one but it could be worth it.

Also, you give no information about results of previous blood tests done.  You must always get copies of blood tests .. ask for copies .. it is your right to have them.

If you have been taking thyroxine for a year it is likely that your thyroid gland has gone somewhat lazy (this happens).  So when you stopped taking your medication recently your thyroid is now struggling to cope.  If you decide to stay off the medication for the time being you need to try to boost the health of your thyroid as you are doing.  Iron is very important for conversion of T4 to T3 and a lack of iron will also make you feel anxious and tired.  If you are told that your iron levels are ok as they are within the range - get a copy. Study them - are they 'low' with the range?  If so, improve them by taking an iron supplement.  The ferritin levels are the important ones for thyroid patients.  I have found that they need to be above 80.

If you can not bear to be without the thyroxine you have the advantage of having the medication at hand and can therefore experiment a little with the small dosage that you are on by alternating days.

You are not alone, you can always post again here or private message any of us.  We have all struggled with this illness and most have found ways of resolving the issues.  Hope your health will improve in the near future.

17

Hello Heather,  If you are able, try it slow, and take 1/2 a tab 12.5 mcg.  Give it a few days then up it.  Levo is not for everyone and some people get bad side effects.  I am on Cytomel (liothyroxine) and if you really get bad side effects ask the doctor if you can try another type of thyroid med.

You need to be informed about your body and what the thyroid does and how important the gland is. I don't know why your doctor would not want you to use the internet to learn about it.  When I was diagnosed in 1987, we had no Internet, no computers, and all I got was a crappy 1 page handout about the thyroid.  Lucky for me - I am a Nurse, so my training gave me knowledge but today you have SO MUCH MORE!

This forum is wonderful and I would have loved it back in the 1980's.  I think you need to stay informed.  I live in the USA but medical conditions like this are worldwide.  It helps to meet people online and learn about it and ask questions.

18

Thank you so much for continuing to post guys. It makes me want to cry with relief everytime I see a reply. Honestly thank you.

I've been off the Levo since I said and my skipped beats have stopped altogether. But now I have really bad bags under my eyes and feel exhausted and cold. It just feels like a lose lose situation sad.

I was considering taking 12.5mg of Levo every second day and see how that goes. My dr is going to get me to see an endocrynologist too.

I've also started on the Autoimmine Paleo diet so I hope this helps with my hashitimos.

I'm going to see a Chinese medicine holistic healer tomorrow too.

19

http://www.btf-thyroid.org/ Hi, have you had a look on the British Thyroid Foundation website (link here). I can understand your doctor not wanting you to get too caught up in some of the information on the web. However, if it is real reasearch, or from a recognised organisation it can be useful. There is also lots of misinformation floating around so obviously dont take as fact, unless the writer can justify. The FB groups are great and I've learned a lot from them - but not every source on them is reliable.

This website will give you some good accurate information as to how the endocrine system works, and you can then build up your knowledge. If you havent already done so, I would suggest you cut out gluten, soy and maybe even dairy products. Doesnt have to be for ever, but try for two or three weeks and see if it helps.

Good luck.

20

Hello Heather - You know there are some darn good Chinese medicine ideas out there.  Western medicine may look down on it, but some of it I am familiar with since I live in Hawaii, USA and we have a lot of Chinese people here.  They have been around over 5,000 years and acupunture helped my hubby's nerve pain coming from his neck. they also have good natural herbal items that help people. So go and see and try something.

There are a lot of meds for the thyroid out there and "Levo" is not for everyone.  If  the Chinese healer does not help ask your GP or Endo for another thyroid med., Please!  I went through at least 4 of them until I found one that worked on me.  I hope this helped.