Help please - My doctor is refusing to up my levothyroxine

[AGATES]

Hi Everyone!

I'm currently 35 but have been borderline underactive thyroid since I was 16 and it was left untreated for the majority of that time, one doctor would put me on Levothyroxine, one would take me off. In 2013 while I was pregnant one of the doctors at the hospital put me back on it and insisted I stay on it, I was on 150mcg Levothyroxine.

After I had my little one and was no longer under the care of the hospital the doctor again took me off Levothyroxine saying everything was normal, I was still borderline and didn't need it at all. In 2015 I was back in hospital and had bloods done, the bloods were sent to my GP who I was informed had not read them until January this year. The hospital were not happy and again insisted I went back on Levothyroxine however my doctor would only allow me 75mcg and insisted i have an up to date blood test that ended up showing I have hashimotos, she has made me wait for 12 weeks before she is willing to retest me to see about increasing the dose.

I had blood taken yesterday and have just had a call from the surgery saying everything is normal and the doctor wants me to have bloods done in anther 12 weeks. I asked them if they were joking because quite frankly I feel like death warmed up. I asked if the doctor was increasing my dosage and was told no your fine she will decide if she wants to reduce it after your next tests, so i asked for the test results to which i was told they were "normal" and she hung up on me, so i called the surgery back and insisted on the actual figures from the results they had which she eventually gave me but refused to give me the guide points.

The results from the last 3 set of tests are below, but I am at the end of my tether with the whole damn thing I am so fed up and frustrated, my mood swings are appalling, i'm constantly tired and feel depressed, I've had large painful swellings in my upper thigh area that couldn't possibly be related to my thyroid because they're in my leg and my thyroid gland is in my throat don't you know. They have no idea what is causing it so they throw 7 days of antibiotics at me, which brings the swelling down then 10 days later its back, i'm in agony and cannot walk and my bowels are so bad from all the antibiotics that even though I am gluten free, caffeine free, dairy free and soy free I am still having to take imodium constantly just to take my 4 year old nursery.

I am completely miserable. Any help and advice would be really appreciated.

2015 results

T4 - 11.5 (12-22)

TSH 10.44 (0.3 - 4.2)

TFT Antibodies >600 (0-35)

Jan 2018 Results

T4 - 9.6 (12-22)

TSH - 11.5 (0.3-4.2)

TFT Antibodies >600 (0-35)

Todays Results (while taking 75mg Levothyroxine)

T4 - 11.2 (12-22)

TSH - 5.49 (0.3-4.2)

I don't understand how these are ok and my doctor is refusing to do any other tests on me.

[FancyPants54]

My goodness! Can you register with another practice and get someone with a brain to help you?

My TSH has just reached 10.3 and I feel rubbish. I can only guess how you feel if you have been left like this for years. You really do need a new doctor. This one is trying to keep you sick. And she's succeeded.

[Peanut31]

Experts will be along shortly, but, your doctor is an idiot.

How can your recent test results be normal when clearly the ranges are next to your results and are out range.

You are legally entitled to a copy of your blood results (lab copies), ignore what the receptionist says and go and collect a copy.

The receptionist tried this one on me saying they were normal, but, I insisted on a copy and they were not normal. I now can access my blood results on line as well.

Can you see a different GP in the surgery?, move surgery, or, have you thought about self medicating with NDT?

You will have to purchase NDT ( Natural desicccated thyroid) yourself and also monitor yourself by paying private for blood tests on a regular basis and cut your doctor out all together.

Its up to you if you tell your GP about self medicating, Most have a fit as they can't control what your are doing, and think that your taking something dodgy. However, if you purchase it from a reliable supplier you will be fine.

As you are feeling so bad this could be a good option. Many people have been forced to do this, or can't get on with Levo so left with no choice.

Thyroid issues play havoc with our bodies, muscle pain, inflammation etc and as you have Hashimotos you could be having flare ups. I had one the other day, it was terrible.

At the moment I am lucky to have an understanding GP within my surgery (one GP within the surgery was horrible to me told me it was anxiety) until my bloods showed my TSH was 12.2 and others out of range. The surgery contacted me straight away and I managed to see My allocated GP whom started me on Levo straight away. I also have hashimotos.

I am currently on 75 mcg now and I have bloods in a few weeks to see how it's working.

I'm feeling better, but, not perfect. When I started on 50mcg I was given TEVA by the chemist, I suddenly became ratty and angry about a week after taking it. I was biting everyones head off and felt in a dark mood.

When it was upped I made sure I switched brands, I am pleased to say I am not ratty or angry on this make.

If Levo doesn't work for me I will self medicate.

It maybe wise to test your vitamins levels as well as if they are low then it doesn't help the situation with you feeling so low. From advice I was given from this forum your medication will not work if vitamins are low. Selenium can also help I take 200 mcg daily and supports the thyroid.

I have learnt more on this forum than any of the so called professionals

Good Luck

Best Wishes

Peanut31

[Aurealis]

Your doctor is negligent... and dangerous. Get a new one and get a new life. Good luck x

[EbonyEvans]

Hello Agates,

Your doctor is negligent. You are under medicated. You should be having blood tests every six weeks until your TSH is under 1 and you feel near normal. Your T3/4 should be near the top of the range. Are you taking any vitamins and supplements? High quality. None of these multi vits.

Are your bloods should be taken first thing in the morning at the earliest available appointment. Do not take your Levothyroxine dose that day. Take immediately after. This gives a truer picture of what is going on. Take Levo after blood draw.

Please change doctors and or surgeries of you can. She sounds like she’s going to keep you ill. Thank fully the hospital we’re involved in your pregnancy dosing as you could have lost your child. In the first trimester. I would also write a complaint letter to the practice manager and local authority about this Gp. She’s dangerous if she’s ignorant and not willing to learn. This is your life she has in her hands. Too often they get away with staying uneducated on certain issues.

[MiniMum97]

Your doctor should be struck off. Shocked to hear that not only can they not read a basic blood test result, they ignore advice given by.consultants!!

In addition wtf are they thinking taking you off levo because “everything is normal”. If it’s making you “normal” then you stay on it you don’t take it for a bit and are then fixed ffs! Does your doctor even have a medical degree? I would perhaps call and ask for some proof 🙄 I have read about lots of incompetent doctors on here but this story really takes things to a whole new level.

Get a new doctor first thing Tuesday and, if you have the strength, put in a complaint about your old one.

[Angel_of_the_North]

Well , obviously those results aren't "normal" let alone optimal. Free T4 is under range and TSH is over range. You need a dose increase QED. Can you see another GP who can do simple arithmetic?

[AGATES]

Thank you for all of your comments, I managed to see a different doctor at the surgery today and really dug my heels in, they increased my dosage to 100mcg but are now fighting my request for Teva branded levothyroxine instead of the two different generic brands they were giving me before that contain lactose. I'm still struggling to convince the doctors that my bowel issues are down to intolerance's rather than the diverticulitis diagnosis I was given when i first complained about them. Is it always going to be such a fight to get treated?