Hello, I recently had a blood test done for my thyroid gland that shows the below results..
TSH W/REFLEX (normal range 0.7 - 3.8) mine=145.2
T4 FREE (normal range 0.8 - 1.7) mine = 0.12
I got these results end of day Friday, so I haven't been able to get more information from my docs. Anyone have anything similair or can lend insight into this?
A TSH of 146.2 would indicate primary hypothyroidism, a failing thyroid gland. However your fT4 0.12 is normal and not consistent with your very high TSH. It's possible that your TSH result is wrong due to antibody interference, so it might be worthwhile asking your doctor to do another blood test using a different assay.
What are your symptoms? It's important to be guided by symptoms.
Jim,
FT4 of 0.12 is anything but normal. (Tontons didn't post 1.2 which is what I think you have read.)
It is very low.
OMG. I went cross-eyed with watching too much football. Tontons, so sorry these results show that you are very hypothyroid and should receive levothyroxine treatment immediately.
Slurred speech intermittently, extreme fatigue, muscles lock up with and without pain and burning, swelling in face, eye, temples, jaw and cheeks. Right side of face gets droopy especially around my eye. Just feel horrible feeling that I cant really explain. Also feel kinda spacey mentally. A lot of choking and shortness of breath at night. Issues just dozing off with extreme tiredness.
Your high TSH indicates that you pituitary gland is calling for more thyroid hormone.
Your low FT4 being low means that your thyroid is not making more thyroid hormone - even though the TSH is telling it to.
You need urgent treatment.
(The bit about "reflex" means that they try to save money by not doing FT4 unless TSH is well out of range. In this case, they have done FT4. In my view, they should also have done FT3.)
How long have you been going downhill?
In my view, your doctors should have been chasing you up and getting you in to see them on Friday - not leaving you another weekend untreated.
I would say about the last couple weeks, give a week or two. I seem to gain a new symptom every day. It was a neurologist that actually suspected this, he prescribed me 25mcg of levothyroxine until I can get in, which I started this morning. With all the symptoms I was having I felt like it was something in my brain so I made an appointment with him.
My actual primary sent me to the rheumatologist who also ran bloodwork, (no results back yet) checking for rheumatoid arthritis.
I am glad your neurologist has at least a bit of a clue.
25 micrograms is grossly inadequate but it can be difficult to know how best to treat people who are very hypothyroid. What must not be allowed is for you to either increase too fast - or not to increase when needed.
You might not be aware that levothyroxine is affected by a very large range of other medicines, supplements, foods and drinks. So it is important to take it on its own - with water. Some people take it first thing in the morning, others (like me) take it at bed-time.
I greatly appreciate your time and comments. Thank you.
I should say I have had odd symptoms similar to this for years, I wonder if this has been going on for the last 18 years and the last few weeks start to show in such a way.
Sounds very likely.
The word "insidious" seems to have been made for hypothyroidism. All too often, it very, very slowly creeps up without being noticed as such. Symptoms slowly develop and appear and worsen. People are often told, or think, it is simply that they are getting older.
Thyroid tests are not expensive (maybe not the very, very cheapest but only a few dollars). Thyroid disorders are very common. The difficulty seems to be that doctors who should think of doing tests simply don't.
Phone GP in the morning and request an immediate increase.
This is an excerpt as you've been very neglected.
"Although starting doses are usually the same, the dose of levothyroxine you end up taking, or how quickly the dose is increased, depends on your symptoms, hormone levels, age and whether you have any other health problems.
Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
Some people, such as over-50s or people with heart disease, may start on a lower dose.
beta.nhs.uk/medicines/levot...
You take thyroid hormones with one full glass of water and wait about an hour before eating.
New blood tests should always be the earliest possible, fasting (ou can drink water) and allow 24 hours gap between last dose and test and take afterwards.
GP should also test B12, Vit D iron, ferritin and folate too.
Always get a print-out of your results with the ranges for your own records and post if you have a query.
I feel very sorry for you as you are another person very, very poorly diagnosed despite your continuing clinical symptoms.
Helvella, this is in response to Tonton’s post, but I’m posting it to you as you will understand the logic in this:
Back in 2011, I had my 6 month routine bloodwork done and my endocrinologist called me and said, “Kelly, have you been taking your thyroid medicine?” I answered “Yes, why?” And she said “Because your TSH is crazy high!” It was 52. (Reference range is 0.450-4.50.) So, as I was only being treated with a compounded T3 liothyronine, she immediately put me on 100 mcg of Cytomel. She said my TSH was so high that I could go into a coma/shock. She said the medicine I had been taking (T3 75 mcg) must have been a faulty batch. So I cannot imagine how sick Tonton must be at TSH of 145.2! The point of my story is that she loaded me up on thyroid medication straight away. By the way, I am from the United States.
That we, in the UK, should be so fortunate to have a doctor like you have as T3 has been removed altogether - without notice - to patients who had been prescribed previously.
Besides Tonton being sent to a neurologist due to her/his symptoms is just an instance of the knowledge of our medical personnel with regard to diagnosing/treating hypothyroidism.
Any doctor who thought 'outside the box' and treated people whose TSH didn't reach 10 would be reprimanded and could lose licence as some 'who were trained in clinical symptoms alone' found out when they lost their licences altogether.
helvella
What is the significance of the w/reflex, if any?
It's just a fancy way of saying "If TSH is in range - more or less - don't do FT4."
The only reason I can see for it is to reduce costs by the FT4 they do not perform.
The logic escapes me. If TSH is so wonderful that it is satisfactory to only do TSH, then why do FT4 ever? Ah - they do FT4 if TSH is out of range. Which means that TSH is not sufficient.
If they are only going to do one of them, why not FT4?
Of course, we would argue that the reflex should then go on and include FT3.
Thanks, I knew about only doing FT4 if TSH was out of range, but hadn't come across the w/reflex terminology before.
And yes - I would agree that the logic used for this sequence of events is very poor.
The term reflex is when it is automatic. Reflective is when someone decides.
Just wondering, have you given up smoking in recent months?
This can sometimes trigger high TSH
Make an emergency appointment to see your GP on Monday morning
You are very hypothyroid
Never a smoker. I plan on calling my GP first thing Monday morning. Thank you.
I just wanted to thank everyone for their time, comments and true sense of wanting to help. Thank you , I am very thankful.
Tontons, It was excellent of the neurologist to prescribe 25 mcg levothyroxine which is the smallest dose usually used. Obviously it is not their speciality and they wanted to get you started. Often with low fT4 figures an endocrinologist will start patients on 100 mcg to get them up to speed quickly. However, if the patient has been hypothyroid for a long time it can sometimes be prudent to start them off on a low dose and gradually increase as in rare occasions patients do not tolerate the higher doses initially.
It will take many months for you to recover. If you are OK on the 25 mcg levothyroxine there's no reason why your doctor / endocrinologist can't start increasing the dose in a week or two. Although your blood test shows you are very hypothyroid I have noticed that patients with a very high TSH usually recover very well. It is those of us with a lower TSH and significant symptoms that tend to be more difficult to treat.
Hypothyroidism can cause lots of symptoms so you may find that your 'rheumatoid arthritis' is simply due to hypothyroidism. I would concentrate on sorting your thyroid and then look at any remaining symptoms. It will take many months for you to recover so it might be a good idea to let employers etc know that you have a problem. Your 'primary' (I think this is what we call a GP in the UK) has been very remiss, they owe you so make sure they get on top of your thyroid treatment.
Get someone to look after you. I also had a TSH reading of over 150, I needed someone to ring doctor and take me because I did not realise how slow I had got and my desire to just sleep was so strong. I had a lot of confusion and muscle pain. I was started on 25mg levothyroxine and increased every week or 2 weeks. I look back and can't believe how quickly I went downhill, I could not get my act together to ring doctor. Do not delay it is very important you say to the receptionist what your TSH reading is 150 and it should be close to zero, and all your sympthoms. please be strong for yourself and look after yourself, my doctors did not realise how serious this TSH reading was, keep talking here. You will feel a lot better sooner than you think. All good wishes to you.
I would endorse Mary's comments. One reason I got confused about your fT4 = 0.12 is that I've never seen a reading this low, usually patients are in a very bad way when their fT4 goes as low as 0.3 (0.8 - 1.7).
I agree that you should have someone help you. I would not drive due to slow reflexes and brain fog. So sorry you’ve been so neglected, but on the positive side you can look forward to starting to feel a lot better within a couple of weeks. Some feel better within 7-10 days when given a hefty boost. I would ask for T3/Cytomel/liothyronine to be added to give you that boost, at least for a week or two. Best thoughts for you.
My TSH was 240 a number of years ago. I see shaws has replied to you who is spot on with comments. You will be ok slow but sure. Take care x
I don't want to start a highest TSH war, just background, once your TSH gets above 100 the level tends to mean less as it becomes more a measure of the strength of your pituitary rather than how bad yor thyroid is. So Tonton although your TSH isn't reaching 240 your hormone level is extreemly low as your fT4 is 0.12.
This appears to be the paper:
onlinelibrary.wiley.com/doi...
(I don't think this paper is relevant to Tontons' current situation as not on any thyroid hormone until yesterday. Nonetheless, interesting.)
I spent most of yesterday attempting to fight nodding off.. failing each time, only to be awoke by choking and shortness of breath, with no energy to get up when the choking and shortness of breath woke me. Just a few quick deep pants and I would catch my breath again.
Today is a tad better(2nd day on 25mcg), I was able to fight the nodding off most the day although extremely fatigued and muscles that burn and feel useless. I feel spacey and keep catching myself staring off into nothing, yet not uncomfortable just odd feeling. I will call first thing in the morning and mention my levels. I have a nifty app that allows me to share my re records and results, so I hope that helps speed the process up.
I guessing there isn't much they can do other than raise my dose and request more bloodwork?
I'm so glad to hear you have had even a tiny improvement. It's a long slow road and I agree that increasing your thyroxine incrementally best. I had similar multiple symptoms to yours and all improved slowly until one day I realised I actually felt really well although it took around 3 years to reach that stage! I did wonder if the decimal point on the TSH reading was correct although the scale used is logarithmic! All the best to you and as someone else suggested you need good understanding friends around to speak up for you!
Tontons, as I wrote earlier your fT4 is extraordinary low. These latest symptoms are concerning and if I were you I would insist you are given an appointment today and properly examined. You could try taking your pulse to see what it is but I suspect it will be shallow and difficult to feel.
Get someone to go to the doctor with you if you can, someone who will stick up for you and politely ensure a care plan is set in action. These latest sysmptoms you have are a warning, severe hypothyroidism can be very dangerous, so your doctor needs to get on top of it now. They might also check your iron levels as low iron causes shortness of breath and it is very common in hypothyroidism.
It will take a week or so before you feel the effects of levothyroxine because it has a long half life of seven days and so takes a few weeks for levels to build up in the body. As you don't seem to be having any adverse reaction to the levothyroxine (very rare anyway) the doctor should consider rapidly increasing your dose.
How are you doing? What did your doctor do on Monday?
The doctor was surprised at how well I was functioning with my levels. She said 25mcg is just a drop in the bucket and will not have an effect, she mentioned 250mcg is more around what I need. She is holding off on upping my dose until she checks me for addison's disease, which can cause a fatal reaction by upping the dose. I do not have the results back from that as of yet, but If I am cleared of addison's disease she is going to increase asap. She said hold on a bit longer we'll get you feeling better.
This has been a journey thus far, a tiring journey. Everyone's questions and support has been awesome and makes me feel much better.
Having seen someone in a dreadful state just after starting levothyroxine, it is wise to be careful.
If she was grabbing 250 out of the air as an example of where you could end up - fine. (And in arithmetic terms, it is a neat ten times your dose.) We see people needing very different doses and the reasons are rarely clear. Hope it is taken steadily and carefully.
Please do come back and write a new post to let us know how it is going.
I didn't watch whatever football you are talking about - so didn't go cross-eyed.
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