I am new I had my Levo stopped and I feel really unwell what do I do please was diagnosed with hypothyroidism in 2012 thankyou
Had levo stopped: I am new I had my Levo stopped... - Thyroid UK
Had levo stopped
Written by
Violet118
To view profiles and participate in discussions please or .
Read more about...
68 Replies
•
Can you tell us a bit about what has happened and why your Levo was stopped please?
Levo stopped because GP believes I do not have hypothyroidism
So who diagnosed you in 2012? An Endocrinologist? Phone his secretary and tell him what's happened.
Is there another GP in the practice you can see and ask for an immediate referal to an Endocrinologist?
Contact the Practice Manager?
You are unwell - ask GP to address these symptoms?
If you can get hold of any of your results, as already mentioned, then post on here asap.
GP in 2012 diagnosed me with hypothyroidism
New GP says I do not have hypothyroidism
I am under an endocrinologist
SeasideSusieRemembering
To try and understand and help you, can you give as much information as possible please.
What were your results when you were first diagnosed?
What are your current results? Were these the results that prompted your GP to stop your Levo? Why does he now believe you don't have Hypothyroidism?
What doses have you been on before? Why were doses changed?
Post results with reference ranges for any of the following important tests
TSH
FT4
FT3
Thyroid Antibodies - TPO and TG
Vit D
B12
Folate
Ferritin
Iron panel
Full blood count
Current results
December 2017
TSH 5.6 (0.2 - 4.2)
FT4 13.8 (12 - 22)
FT3 3.3 (3.1 - 6.8)
GP stopped Levo, comment given - GP comments - not on Levothyroxine, not diagnosed with hypothyroidism and not being monitored
On diagnosis
August 2012
TSH 44.2 (0.2 - 4.2)
FT4 10.1 (12 - 22)
Violet, you were clearly hypothyroid with a TSH of 44.2 and you are still hypothyroid with a TSH of 5.6. What results caused the Endo to stop your thyroid medication? In any case, he/she was very wrong.
You are recieving very poor treatment and care and your Endo is making you ill. As it was not the GP who ordered your thyroid medication to be stopped, I would make an urgent visit to the GP, point out your results when diagnosed and your above range TSH now and insist your thyroid medication is reinstated starting at least on 50mcgs or 75mcg depending on how long you've been off them. I would never visit that Endocrinologist again - he/she is dangerous. You might consider making a formal complaint.
Sorry I mistyped, the GP stopped my Levo due to following comments
GP comments - not on Levothyroxine, not diagnosed with hypothyroidism and not being monitored
I think Clutter might be right. It's an admin error. Have you tried to collect your levothyrxoine prescription? You need to contact one of the GP's at your practice right away and get your prescription reinstated if it's not available to collect.
Yes I tried to collect it and the GP receptionist has said I don't need levo
Tell GP receptionist to butt out. It's none of her/his business. Ask to speak to the practice manager and bypass the receptionist. Tell the manager you are terribly ill because you have been prevented from collecting your prescription by the receptionist it is critical you get the medication you need immediately because you have already gone without it for some time. Tell her she needs to arrange for you to collect the prescription the same day.
TPO antibodies 8100 (<34)
TG antibodies 277.5 (<115)
I guess you know from your Thyroid antibodies results that you have autoimmune thyroid disease known as Hashimotos. It's not going to vanish so I'm not sure on what grounds the Endo thinks your thyroid condition has cleared up!!
The GP was the one who stopped my Levo and I tried to ask the endo what my antibodies were and he said they were nothing important
Violet118,
Typical comment from UK doctors. What they mean is they have no treatment for antibodies so they think they're unimportant.
Thyroid peroxidase and thyroglobulin antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.
You have Hashimoto's Autoimmune Thyroiditis and Hypothyroidism.
Treatment is for life.
Your TSH is far too high. At 5.6 it is also above the "normal range" for a person who does not have Hashimoto's / Hypothyroidism.
Your FT3 and FT4 have room for improvement.
With these current results you should have been prescribed an increase in dose . Followed by retest in 6 weeks.
Clearly something has gone wrong in communication. Between Endo and new GP, see the Practice Manager.
It helps to put full information in.your original post - saves time. Always give dates of tests.
Sorry my brain is not working
No need to apologise. It's the New GP who should be apologising to you.
When did you last take Levothyroxine and what dose was it?
When did you last have T3?
I last took levo on 17 January 2018 and I was taking 150mcg, last had T3 briefly about mid October 2017, can't remember exact date
It's not surprising that you are feeling unwell . You're now feeling the effects of Levothyroxine being stopped.
Could you call 111 for advice ? See if an emergency prescription can be arranged? OR call Out-of-hours GP ? Ask for telephone advice & help.
Did you go to the same Pharmacy for your presriptions? They will have your records on the computer. Could you visit them and ask their advice / help?
I am going to call 111 for advice, I go to same pharmacy for prescriptions and I have gone to them before about problems with Levo, they tell me to go back to GP if I have problems with Levo because they are not doctors
Dose changes have been
August 2017 200mcg Levo/10mcg T3
January 2017 175mcg Levo/10mcg T3
November 2016 150mcg Levo/10mcg T3
July 2016 125mcg Levo/10mcg T3
March 2016 100mcg Levo/10mcg T3
January 2016 100mcg Levo/10mcg T3
November 2015 75mcg Levo.10mcg T3
September 2015 75mcg Levo/10mcg T3
July 2015 175mcg Levo
May 2015 150mcg Levo
January 2015 125mcg Levo
November 2014 100mcg Levo
August 2014 50mcg Levo
June 2014 no Levo
March 2014 no Levo
December 2013 125mcg Levo
October 2013 125mcg Levo
August 2013 100mcg Levo
August 2012 diagnosis given
Violet, this is one of the worst cases of levothyroxine withdrawal I've seen on this site. I suspect your ENdo is withdrawing your T3 and has therefore told you untruths about your condition. Clearly you were and are hypothyroid and you need levothyroxine.
Dropping a dose from 200mcg Levo/10mcg T3 to zero is malpractice in my humble opinion. It is inevitable you would feel ill and it's a cruel thing to do. If needed medicine was withdrawn from a sick animal, the owner would be held culpable by the RSPCA and you're being treated worse than a sick animal.
This is the most dreadful care. As Clutter says, post your thyroid blood test results that you recieved when the Endo decided to cut your dose to nothing so that people can help you understand the results.
Edit: Ok so, you say it's not the Endo that removed your levothyroxine and there seems to be a mix up at the GP's so it all needs sorting out. It sounds like a dreadful mix up but the main thing is that you need to get back on levothyrxoine as you're now hypothyroid.
With the dose changes listed above sorry?
I'm meaning that it's wrong your levothyrxoine has been withdrawn.
You haven't posted your blood test results along with the dose changes so I can't comment on that.
Can I post the other results?
of course
Dose changes have been
August 2017 200mcg Levo/10mcg T3
TSH 0.03 (0.2 - 4.2)
FT4 21.3 (12 - 22)
FT3 4.0 (3.1 - 6.8)
January 2017 175mcg Levo/10mcg T3
TSH 1.60 (0.2 - 4.2)
FT4 16.2 (12 - 22)
FT3 4.5 (3.1 - 6.8)
November 2016 150mcg Levo/10mcg T3
TSH 3.80 (0.2 - 4.2)
FT4 17.1 (12 - 22)
FT3 5.0 (3.1 - 6.8)
July 2016 125mcg Levo/10mcg T3
TSH 3.60 (0.2 - 4.2)
FT4 13.6 (12 - 22)
FT3 4.3 (3.1 - 6.8)
March 2016 100mcg Levo/10mcg T3
TSH 6.8 (0.2 - 4.2)
FT4 12.9 (12 - 22)
FT3 4.2 (3.1 - 6.8)
January 2016 100mcg Levo/10mcg T3
TSH 0.08 (0.2 - 4.2)
FT4 22.4 (12 - 22)
FT3 4.6 (3.1 - 6.8)
November 2015 75mcg Levo.10mcg T3
TSH 0.02 (0.2 - 4.2)
FT4 20.6 (12 - 22)
FT3 5.3 (3.1 - 6.8)
September 2015 75mcg Levo/10mcg T3
TSH 0.02 (0.2 - 4.2)
FT4 20.3 (12 - 22)
FT3 5.2 (3.1 - 6.8)
July 2015 175mcg Levo
TSH 1.30 (0.2 - 4.2)
FT4 19.5 (12 - 22)
FT3 3.8 (3.1 - 6.8)
May 2015 150mcg Levo
TSH 5.01 (0.2 - 4.2)
FT4 14.3 (12 - 22)
FT3 4.0 (3.1 - 6.8)
January 2015 125mcg Levo
TSH 2.70 (0.2 - 4.2)
FT4 13.1 (12 - 22)
FT3 4.0 (3.1 - 6.8)
November 2014 100mcg Levo
TSH 6.1 (0.2 - 4.2)
FT4 13.8 (12 - 22)
FT3 4.2 (3.1 - 6.8)
August 2014 50mcg Levo
TSH 2.58 (0.2 - 4.2)
FT4 15.7 (12 - 22)
FT3 3.7 (3.1 - 6.8)
June 2014 no Levo
TSH 0.03 (0.2 - 4.2)
FT4 20.6 (12 - 22)
FT3 6.2 (3.1 - 6.8)
March 2014 no Levo
TSH 1.88 (0.2 - 4.2)
FT4 13.7 (12 - 22)
FT3 4.0 (3.1 - 6.8)
December 2013 125mcg Levo
TSH 4.8 (0.2 - 4.2)
FT4 15.3 (12 - 22)
October 2013 125mcg Levo
TSH 4.6 (0.2 - 4.2)
FT4 15.6 (12 - 22)
August 2013 100mcg Levo
TSH 4 (0.2 - 4.2)
August 2012 diagnosis given
August 2017 200mcg Levo/10mcg T3
TSH 0.03 (0.2 - 4.2)
FT4 21.3 (12 - 22)
FT3 4.0 (3.1 - 6.8)
These results certainly did not indicate a dose reduction or stoppage. Your TSH is low but that's not a problem since FT4 and FT3 are in range.
Get your levothyroxine reinstated right away as it's not that long ago you stopped taking levothyroxine. You also need your T3 reinstated but if GP refuses you might need your levothyrxoine dose increased so make sure you retest in 6 weeks.
My boyfriend noticed a huge difference when I took T3, can I just not add it to the 150mcg Levo?
I don't have experience with T3 so I hope someone else will comment. I just know it's hard to get now and Endo's have stopped prescribing it. However, there are people on this site who can help.
I still have some left and I plan to get in touch with the endo who identified me as having a clinical need for it
Give it a go, maybe you can get new GP to refer you to the previous Endo.
Ok I'm going to call the endo who prescribed me T3 and I'm going to go back onto full dose of Levo and the 10mcg T3, even if it means leaving her a message
It's good to hear that you are going back on your Levothyroxine and are able to contact the Endocrinologist who diagnosed you - but I'm a little confused. Thought you said GP practice refused your repeat prescription and you ran out of Levothyroxine on 17 January?
Didn't realise there were 2 different Endos involved.
It makes more sense now - New Endo and New GP. Maybe neither has looked at your history . Still no excuse for putting your health at risk, though.
Violet118,
Can you confirm whether your Endo or GP stopped your Levothyroxine prescription and what the TSH, FT4 and FT3 results were when it was withdrawn?
GP stopped it due to comments - not on Levothyroxine, not diagnosed with hypothyroidism and not being monitored
TSH 5.6 (0.2 - 4.2)
FT4 13.8 (12 - 22)
FT3 3.3 (3.1 - 6.8)
Violet118,
Where were the comments from? Were they from the lab on the results sheet or from the endo?
From the lab on the results sheet, GP receptionist has also said I don't appear to have hypothyroidism either
Violet118,
That's just a generic lab note because the lab hasn't been informed you are taking Levothyroxine. It doesn't mean some idiot should take you off Levothyroxine when the results show you are undermedicated! Your GP only has to look at your prescribing and medical history to see that you are hypothyroid and have been taking Levothyroxine for years.
I think it's likely to be an admin error. Make an appointment to see your GP because you need a dose increase anyway.
The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.2 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email dionne.fulcher@thyroiduk.org if you would like a copy of the Pulse article to show your GP.
Lost my way with supplements do I post levels anyway?
If you want advice, yes. It will be helpful if you say what supplements you are taking too.
December 2017
Ferritin 33 (30 - 400) haematologist wants ferritin above 50 as I have iron anaemia
Folate 2.1 (2.5 - 19.5) taking folic acid once a day since 2016
Vitamin B12 208 (180 - 900) first B12 injection given 1 week ago
Vitamin D 33.8 (25 - 50 deficiency) taking 800iu D3 since 2013
Violet118,
How much iron are you taking?
It seems to me you aren't taking enough folic acid if it's still deficient 2 years after taking daily folic acid.
healthunlocked.com/pasoc are the experts on PA, B12 and folate deficiencies if you need more advice.
Your GP should have referred to local guidelines or the cks.nice.org.uk/vitamin-d-d... and prescribed loading doses for vitamin D deficiency. 800iu which is a maintenance dose to be prescribed after vitD is replete >75. You need at least 50,000iu D3 per week, perhaps more, to raise your vitD. My GP prescribed 40,000iu daily x 14 followed by 2,000iu daily x 8 weeks which raised vitD from <10 to 107. Vitamin D should be taken 4 hours away from Levothyroxine.
Thanks no iron given
Violet118,
How do you think your ferritin will rise above 50 if you don't take iron? Did haemotologist not direct your GP to prescribe iron?
Treatment for iron deficiency anaemia is usually 3 x 210mg Ferrous Fumarate. You should take each iron tablet with 1,000mg vitamin C to aid absorption and minimise constipation. Take iron 4 hours away from Levothyroxine when your prescription is reinstated.
Haematologist discharged me with 8 weeks of iron and wrote to GP saying level to be monitored every 3 months and ferritin kept above 50. Iron never reissued
Violet118,
Why didn't you ask your GP for a repeat prescription? Ask your GP when you see him/her about reinstating your Levothyroxine and increasing vitD.
I did ask but the GP said ferritin in range so no prescription needed
Violet118,
Did you point out that the haematologist had written stating ferritin should be >50?
Yes, I don't know why the GP is ignoring it
Were you ever tested for Pernicious Anemia?
Violet118,
I guess you need to change GP and make a complaint to the practice manager that GP has ignored haemotologist's direction to prescribe iron until ferritin is over 50, has prescribed insufficient vitD and folic acid to address deficiencies and either your GP or another GP at the practice has withdrawn your Levothyroxine because of comments on the lab results sheet.
I would contact Haematology Department at 9am and ask to speak to someone re iron. Ask if you can be seen in clinic.
What was your B12 result when Folic Acid tablets started. Wonder why they didn't start B12 injections first.
Book an urgent appointment with gp. If possible take someone with you as an independent witness. Write down your questions before you go. Ask why when diagnosed with hypothyroid in 2012 with TSH of 44 your medication has been completely stopped. Have a list of your symptoms and the level of medication you were on when the last blood tests were taken. Ask why TSH of 5.6 which is raised, resulted in stopping medication. Ask has there been a mistake? I expect the gp will say yes. It is then your call if you want to accuse them of negligence, which they have been, but I understand when feeling so unwell it is hard to pursue.
GP receptionist said no mistake, she says thyroid levels normal
Violet118,
GP receptionist is not qualified to comment. She may be repeating something a GP has said. If not, she should be reprimanded for speaking outside her competence. You need to discuss your results with your GP.
Only for someone on treatment and even then it is over range, the person who ordered the blood test didn’t record that you were on levothyroxine, therefore the level wasn’t high enough for someone who wasn’t on treatment to start treatment. A receptionist is NOT a medical professional, he/she will not have been reading your medical records to know that you were on treatment. Please see a medical professional with an urgent appointment, you will only get rapidly worse.
Was happier on T3, not tired, felt warmer, concentration better, fed up of feeling so awful, I need to feel improvement now
hi violet,
you got a lot of advise from here and it might be confusing you, (it does me, but then, I read too fast) if I was you, take notes what is said in here to you and take one step at the time.
I feel with you.
do you think, your partner will go with you to see your GP?
going by the earth timeline, we are still cave men, and women have a hard time to be taken serious.
having somebody with you (anyone)) makes the GP cautious of what he is telling you.
I wish you the best of luck in your fight for your right of a better health. 🍀👍
Violet118 - just to add to christa1 above. When we're ill and dosages have been so messed about as yours seem to, getting our thoughts in order is overwhelming.
Well done you for marshalling all the information you've given in this thread. Use it when you get to the GP, with a supporter if that's possible.
Complaints about receptionists, medical decision-making, other medics etc, can be dealt with once you're back on an even keel.
Your limited energy and brain bandwidth at the moment need to be focused entirely on your getting properly medicated again.
violet, I second what megarub is saying.
have you got a friend to take with you to the GP, or a family member....
""don't worry about your health""
I don't want to be nasty, but one of the symptoms with thyroid complains can be the loss of libido.
if you lose that what is "he" going to say?
try to relax if you can and don't worry too much.
get your phone call organised and make a list with your dates, meds, bloodresults and vitamins test results. to show to the 'ignorants'
might be an idea to get something in writing from the "good endo" about your need of t4and t3.....
the numbers should be in the upper ranges, "in Range" is not good enough for hashies and hypos.
x
No friends and my family have pretty much isolated themselves from me due to my ongoing health issues
That's very common with hypothyroidism - friends and family leaving you isolated. It's tough and hard to rebuild those relationships when back on track. SlowDragon is right though. You must address your vitamin deficiencies because your body will struggle to use any thyroid hormone including T3 properly if you don't get all your ducks in a row. That means getting your vitamin levels right and your gut function too.
Not what you're looking for?
You may also like...
Does levo stop working
recently due to cost . Have had every test under the sun. Just wondering can levo stop working...
Abrubtly stopping Levo
scientific about my decision. Just have had enough of feeling like crap. Feel completely symptom...
Question about stopping Levo
Hi I am new my name is Lena I was diagnosed hypothyroid in 2012, my GP thinks it would be a good...
Stopped levo - now only on T3
I ran out of levo and thought \\"why am I taking this still?\\" So thought I'd just stop and...
New doctor stopped Levo(T4)!
So, I have visited a new doctor today and he has told me to stop taking Levo as T4+T3 combo has...
Is it dangerous to just stop taking Levo?
Stopping Levo starting T3 Cytomel
Dystonia and stopping Levo. Any advice, please?
Advice please- GP wants me to stop levo
whats will happen if I just stop taking Levo?
